Albinism community in Indonesia

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2011-10-30T13:10:00.000-07:00

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2011-09-12T05:04:00.000-07:00

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2011-05-31T07:14:00.001-07:00

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2011-05-28T01:01:00.000-07:00

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Australia Bali Eye Centre Wins Extra Australian Funding

2011-02-05T07:39:00.000-08:00

DENPASAR

The Australia Bali Memorial Eye Centre has been given an extra A$3 million (Rp26.4 billion) to help ensure it reaches its full capacity as a world-class facility.

The additional funding was announced by Australia’s ambassador to Indonesia, Greg Moriarty, on a visit to Bali in January.

Since opening in 2007, the centre has performed 1,000 cataract surgical procedures every year, preventing blindness and restoring the eyesight of thousands of Balinese people.

At the centre’s opening Australia committed A$7 million (Rp61 billion) to build the eye centre, provide equipment, train staff, operate mobile clinics and give scholarships to health officials.

The additional funding will bring the total amount of Australian support to A$10 million (Rp88 billion).

Announcing the new funding, Moriarty said: “Cataracts are the leading cause of blindness in Bali, with more than 50,000 people affected by this treatable condition. Australia is proud to be working with Indonesia to reduce blindness in Bali.”

During his visit Moriarty also held discussions with Governor I Made Mangku Pastika, the regent of Badung and other senior officials, as well as with and key Indonesian and Australian figures involved in business, arts and culture.

He met 33 Australian teachers taking part in the Endeavour Language Teacher Fellowships Programme, an Australian government-funded Indonesian language programme that provides Australian language teachers with the opportunity to improve their language and cultural skills through a three-week study programme in Indonesia.

“The expanding commercial linkages as well as associations through education, art and culture are critical elements in the forging of closer ties between Indonesia and Australia,” Moriarty said.

“I am delighted to note that the continued growth across these areas can only enhance the two countries’ shared future and continued close cooperation.”

The Australia Bali Memorial Eye Centre is an eye clinic and day surgery centre in Indonesia. It opened on October 1, 2007.

The construction of the Centre was part of the Australian Government’s Bali Recovery Package after the 2002 Bali bombings, and was achieved after a submission to the Australian Government from The John Fawcett Foundation. The $7 million project was commissioned by AusAID, with a design team which included experts from Australia and Indonesia. The Centre is owned and managed by the Bali Provincial Department of Health and operated in partnership with the John Fawcett Foundation and its Indonesian arm, the Yayasan Kemanusiaan Indonesia.

Staff from the Lions Eye Institute in Perth, Western Australia, were instrumental in setting up the Centre. The Institute’s director of nursing, Elizabeth Zambotti, commissioned the facility after playing a key role in its development, while Institute director Professor Ian Constable oversaw training of Indonesian ophthalmologists by LEI staff.

In the first two days 160 Indonesian patients were seen and a dozen cataract operations were performed by Indonesian ophthalmologists.

The Centre has a training facility with digital imaging teaching capacity to enhance the surgical skills of young Indonesian and Australian graduate ophthalmologists, providing for academic exchange between Indonesian and Australian ophthalmologists and trainees. Theatres provide digital imaging from microscopic views of eye surgeries for capture, replay and analysis. The wet lab also has video imaging facilities for teaching.

It is planned to develop specialized clinics in the Centre for glaucoma and diabetic retinopathy which are on the increase in the Balinese community. The Centre also has optometry facilities with basic manufacturing and assembling capacity to cater for the almost 70 per cent of poor patients who benefit from remedial glasses.

In the event of a natural disaster in Bali, the 2,500 sq m two-story building also has the potential to become a first-level trauma centre, as it has two theatres/three-table surgical capacity and high quality sterilization, x-ray and ultrasound facilities.

Two mobile eye surgical units are attached to the Centre and travel to remote areas in Bali to operate on the poor in their villages. Each mobile clinic team with one ophthalmic surgeon, four nurses and two drivers can check over 18,000 people with eye problems in a year and perform around 1,200 cataract operations.

The construction of the Centre was part of the Australian Government s Bali Recovery Package after the 2002 Bali bombings, and was achieved after a submission to the Australian Government from The John Fawcett Foundation. The 7 million project was commissioned by AusAID, with a design team which included experts from Australia and Indonesia. The Centre is owned and managed by the Bali Provincial Department of Health and operated in partnership with the John Fawcett Foundation and its Indonesian arm, the Yayasan Kemanusiaan Indonesia.
Staff from the Lions Eye Institute in Perth, Western Australia, were instrumental in setting up the Centre. The Institute s director of nursing, Elizabeth Zambotti, commissioned the facility after playing a key role in its development, while Institute director Professor Ian Constable oversaw training of Indonesian ophthalmologists by LEI staff.
In the first two days 160 Indonesian patients were seen and a dozen cataract operations were performed by Indonesian ophthalmologists.

TRANSCRIPT
REMARKS
H.E. DR. SUSILO BAMBANG YUDHOYONO PRESIDENT OF THE REPUBLIC OF INDONESIA
AT THE
OPENING CEREMONY OF
THE AUSTRALIA-BALI MEMORIAL EYE CENTRE
DENPASAR, 27 JULY 2007

Bismillahirrahmanirrahim,
Om Swastiastu,

Honorable Prime Minister of Australia John Howard and Mrs. Janette Howard,
Excellencies, Ladies and Gentlemen,
I am delighted to be here with my good friend Prime Minister John Howard on this beautiful day to inaugurate the Australia-Bali Memorial Eye Centre.

This Eye Centre is a fitting tribute in memory of our brothers and sisters who lost their lives in the terrorist attacks on 12 October 2002.

Today, the terrorists who are responsible for such monstrous crimes have been captured, tried and put behind bars. They have utterly failed to advance their misguided cause of hatred.

Indeed, what prevails today, here in Bali and throughout Indonesia, is the magnificent force of the human spirit: the spirit of hope, the spirit of love, the spirit of humanity, and the spirit of friendship.

Everyday since that fateful day of 12 October 2002, we have found a million ways to honor and celebrate that spirit of goodness. This wonderful Eye Memorial that we are opening today is a towering example of that. This Eye Centre is also a monument of the enduring and growing friendship between the Governments and people of Indonesia and Australia.

When Prime Minister John Howard and I declared the Comprehensive Partnership between our countries 2 years ago in Canberra, we understood very clearly that for it to be strong, this partnership needed to be built at the grassroots level, it has to bring real benefits, and it has to be relevant to the daily lives of our people. It is therefore only fitting that this Eye Memorial is built in the island of Bali.

It is here in Bali that tens of thousands of Australians come to work, study, rest, surf, and play each year. Many Australians have genuine affinity and attachment to Bali. And the Balinese have always been happy to welcome Australians as part of their community.

It has escaped media attention that there are many Australian citizens who are involved in charitable work for Indonesia.

This is why I know that the hard work John Fawcett does to develop this Eye Memorial comes from his heart, from his love for the island and the people he befriended when he first came here in the 1980’s.

I speak on behalf of the people in Bali in expressing their gratitude to the John Fawcett Foundation and Yayasan Kemanusiaan Indonesia, and of course to the Government of Australia, for making this Eye Centre a reality. It is my hope that the Community Eye Treatment Centre, despite its modest beginnings, will be one of the most advanced in Indonesia.

No doubt, you will have plenty of visitors here: as Governor Dewa Beratha said just now, over 50,000 Balinese are said to be affected by blindness, especially cataract blindness. If they cannot find you, or if they are too far away or too poor to travel, I am pleased to learn that the center will have 2 mobile outreach clinics to find those with eye problems.

I trust that this Eye Center will work closely with the Bali Provincial Department of Health to achieve our common objectives to help our people. The fact that Eye center and the Department of Health are physically situated side-by-side in this block will make it very easy for them to coordinate and cooperate.

This project fits perfectly into the utmost priority which my Government attaches to the health sector. The health sector is in the top 5 sectors receiving the largest portion of national budget, and this year we are nominally spending more on the health sector than at any other time in Indonesia’s history.

Through our combined efforts, we can all push Bali into the forefront of eradication of cataract blindness, and put Bali on the fast track to reaching the goals of Vision 2020, the worldwide goal set by the World Health Organization of eliminating avoidable blindness in the next 13 years.

This Australia Bali Eye Center therefore is not a statue; it is a working and living memorial.

I wish you all the best in your noble work, and I thank you for reminding us all that life is beautiful, and worth seeing.

I thank you.

*****

Bureau for Press and Media Affairs
Presidential Household

A Patch of Paradise Book

2010-12-06T22:03:00.000-08:00

A Patch of Paradise Book

Patch of ParadiseThe desire to leave stressful city life behind and move to a tropical island is, for most, just a dream. Gaia Grant decided to turn that dream into a reality. Packing up her family and travelling through Asia - overland by train through India, climbing mountain peaks in Nepal with her toddler in a backpack, she eventually found an idyllic setting in Bali. But this was only the beginning of an exciting adventure for Gaia and her family.

In A Patch of Paradise, Gaia discovers the many sides of paradise. She shares her experiences of gradually being drawn into the exotic heart of Bali, before discovering the anguish and heartache of living in a country in turmoil. The island's vibrant culture and unique community lifestyle provides a peaceful retreat, but even paradise cannot escape the pain.

The book describes how Gaia and her husband embark on the challenge of finding and setting up a home in a thatched beach hut in a Balinese village, and how they learn the importance of finding enjoyment in simple pleasures, of giving and receiving in equal measure. Gaia is able to draw readers into the daily delights and challenges of island life - as well as the trials of living and working in a country in dramatic transition - with both humour and sensitivity. By providing an inspiring personal perspective, the rewards of following dreams with a determined spirit and an open heart are revealed.

Seven years after arriving on the island she and her husband now run a highly successful international business from the same thatched hut they found when they arrived.
A woman's search for a life in Bali

"I can walk out my front door onto a white sandy shore, or duck out the back into a coconut grove and pluck fresh pawpaw from the trees. I can feel as though I am worlds away from the twenty-first century - yet whenever I re-enter my thatched bamboo hut the contemporary world comes to me. I have found the best of both worlds."

Patch of Paradise Patch of Paradise Patch of Paradise

An inspiration for anyone

A Patch of Paradise is an inspiration for anyone who has dreamt of breaking out and finding a different way to live. Take the adventure of your lifetime with this evocative memoir of a woman who sought - and achieved - a permanent seachange.

NOAH's 13th National Conference in Washington, D.C. - July 15-18, 2010!!!

2010-07-25T23:47:00.000-07:00

NOAH's 13th National Conference in Washington, D.C. - July 15-18, 2010!!!

Registration packets were mailed the week of April 5th.
Forms can also be downloaded HERE.
Download Conference Brochure

Registration Fees:
Early bird member rates begin at $150 for members ages 5 and up; $75 for children ages 6 mo to 4 years

Registration packets will be mailed to all current NOAH members in late March. Join or renew your membership TODAY to be sure that a registration packet will be mailed to you.

The Conference Hotel
Crystal Gateway Marriott
1700 Jefferson Davis Highway
Arlington, Virginia 22202

Across the river from Washington, D.C., and just minutes from Reagan National Airport, the Crystal Gateway Marriott offers exceptional accommodations, luxurious amenities and impeccable service. This Crystal City Marriott is surrounded by Arlington’s best shopping and dining with the Crystal City Metro stop accessible from the lobby of the hotel.

Room Rate
$149* per night Wed–Sat, July 14th–17th
(available to registered attendees only)
$159* per night before July 14th or after July 17th
* Plus tax

Reservations:
Call 1-800-266-9432 no later than June 22, 2010,or use the online reservation system:
https://resweb.passkey.com/go/noah2010.

Reservations require a one night deposit plus tax,refundable if cancelled 72 hours before arrival.

Good Friday Blessings

2010-04-01T17:34:00.001-07:00

Get More Good Friday Glitters

Impossible Dream Lyrics

To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
And to run where
the brave dare not go
To right the unrightable wrong
And to love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star
This is my quest
To follow that star
No matter how hopeless
No matter how far
To fight for the right
Without question or pause
To be willing to march,
march into hell
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That my heart
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When I'm laid to my rest
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Obituary : We express our profound condolences on the passing of Lia Sutoro

2010-02-26T00:59:00.000-08:00

Lia_sutoro_kakak_angkat_obama_meninggal_di_sukabumi/

Sukabumi
(AFP) - U.S. President Barack Obama ‘s reportedly adopted sister, Holiah (53) alias Lia
Sutoro who lived in Kampung Babakan Banten RT 03 / RW 09 Sukasirna village, Cibadak Subdistrict, Sukabumi Regency, West Java, passed away on Thursday evening (25 / 2).

Non mbak , little Ob...ama used to
call her, was buried not far from their home on Friday morning at around 09.00
am. Lia died of heart attack on Thursday
afternoon at around 17:45 .

Before her death, Lia was scheduled to meet with Barack Obama who
will visit Indonesia in March next month.

" This Thursday
(25 / 2) My wife should have been in
Jakarta for a meeting to prepare Barry’s visit
(Barack Obama’s bosom nickname) at LCC Menteng,Dalem, Central Jakarta," said Lia's husband, Eddie Sobah (60) in Sukabumi, Friday.

Edi disclosed, prior to her last
puff, Lia was interviewed by a radio station in Jakarta. However,
soon afterwards Lia complained of a headache.

" my wife got sick and based on a doctor’s examination , the blood vessels in the brain rupture and she should be taken to the hospital," he said, his eyes
brimming with tears.

And, he added, as she was about to be taken to the hospital, she had her last
breath.

According to him, Lia has long
complained of lingering illnesses , and based on health examination at Bukit
Duri Health Center, Jakarta, Lia suffered
from high blood pressure and cholesterol.

"Before she died, Lia hoped to meet with American President. However, before her request was granted, Lia died ," he said.

Edi hopes her memories with
Barry as a child, can be taken by Barack Obama himself during his visit to
Indonesia , in the form of two cups, bed
sheets and a monkey doll.

"It is my hope as well as my wife, so that Barry could see the
things that memorable," he said.

One of Lia’s grandchildren ,
Yudha, admitted, her grandmother once said to him, that he must be a smart and good guy , like Barack Obama who has become President of the United States.

"She also talked about Barack Obama who has successfully become the President, as he used to dream " he said.

Indonesian Albinos Proud of Being Different

2010-02-05T17:53:00.000-08:00

Indonesian Albinos Proud of Being Different
The Jakarta Globe
Dalih Sembiring

“I’m an albino and I’m proud of it,” Muhammad Iqbal Michael Syahputra wrote on the info box of his Facebook account.

He does not find the term derogatory as long as it is conveyed in a neutral tone.

“I have tried to find other Indonesian albinos on Facebook, but to no avail,” said 29-year-old Mike, who also goes by the Western name John Nikolas Michael Tambayong. “Maybe there is only me out there, or maybe they are using fake photos because they are ashamed of how they look. Or maybe they just can’t operate the computer because of the sensitive nature of an albino person’s eyes.”

One evening earlier this month, Mike sat with his sisters Angel Maharani and Angelique Kusuma Dewi, who are also affected by albinism, at a diner in Cilandak Town Square in South Jakarta to break their Ramadan fast.

Their mother, Murni Ediyati Katamso, daughter to one of Indonesia’s 1965 revolution heroes, Gen. Katamso Dharmokusumo, was also there. She is not an albino, but of her six children, three of them are. She gave each of them two names.

“I thought Western names would suit their white skin, but a spiritual person later advised me to give each of them a Muslim name,” Murni said.

The siblings’ looks — pale to reddish freckled skin, lemon- to soot-colored strands of silky hair and celadon eyes — have the tendency to make people steal second glances at them and wonder if they are Caucasian. They are, however, rare examples of oculocutaneous albinism, in which a lack of melanin pigment occurs in the skin, hair and eyes.

“It is indeed hard to get to know people with albinism here, even for us,” said 35-year-old Angel, Murni’s second child. “I once got off an angkot [public minivan] after a friend told me she had seen another albino. I approached him, but before I could even introduce myself, he ran away.”

Explaining that albinos often lack self-confidence, Mike said that whenever he came into contact with others with the same condition, they almost always keep their heads down.

“I didn’t want to be like that,” he said.

He isn’t, and credits his parents’ “coolness and support” for giving him the self-assurance to become the vocalist and guitarist of a punk-pop band called Prosthetic.

“I would like to become a member of the House of Representatives if I could, with an agenda to help people with eyesight problems and to eliminate the discrimination people like me face,” he said. “But for now, I want to make it as a musician. Some of my songs are about discrimination.”

Murni, a 53-year-old former fashion model, said that unfortunately, it was common for parents with albino children to hide them out of shame.

“But not me,” she said. “I took them out with me wherever I went. I didn’t want them to grow up embarrassed just because of their unusual features.”

Murni’s husband doesn’t have albinism either, but has a family history of the condition. Murni said she explained to anyone who made derogatory comments about her children being bule (foreign) that they were Indonesian and that their looks are a result of a variation in their genes.

She said she was also used to confronting those who made accusations that the three siblings were inflicted with an infectious disease resulting from incestuous parents.

Angel, who is married to a dark-skinned man from West Sumatra, said she has a son who is not albino. “However, my husband and I had to fight for our marriage to happen,” she said.

Angel, Angelique and Mike have run their own businesses for almost five years.

“I run a cellphone shop, Angel sells phone credit and Mike runs a service center for cellphones and helps with the provision of products,” said Angelique, whose yellow hair has been dyed brown.

“Unless albino people have a good connection at some company, it is almost impossible to get a full-time job with a decent position. So we figured we should just become entrepreneurs, for our own sakes,” she said.

The siblings applied for full-time positions at several companies, but all were turned down. Mike has better sight than his sisters, which they credit to his regular intake of carrot juice, but he could not persuade anyone to employ him despite his excellent English, computer skills and wide general knowledge.

Angel is not disappointed, even though she worked hard to attain a law degree from Pancasila University in South Jakarta. “I basically learned by using my hearing,” she said. “I couldn’t count on my sight.”

At her last eye exam, she scored minus 10 on the myopia scale, which is a measure vision. “Some of my friends were kind enough to let me borrow their notes and a professor suggested that I use a voice recorder. But reading text books for my final thesis, as well as typing it up, was extremely tricky.”

“That’s the same reason Angel and I don’t have Facebook,” Angelique added, with a laugh. “But maybe we should, so that other albinos will open up.”

By dealing with her impediment, Angel has proven that she was no different from non-albino children with normal sight academically. Sometimes, she was even better.

“Angelique, Mike and I always got high grades in class and I graduated university with a cumulative GPA of above average,” Angel said. “I also think that I’m the only Indonesian albino to have ever read a poem in front of a president. It was 1984, at the commemoration of National Heroes Day, and the president was still Suharto.”

Mike added, “And that’s why other Indonesian albinos shouldn’t be ashamed of who they are and also why people with normal looks shouldn’t underestimate people with albinism.”

What should you Do If Your Wife Gave Birth To An Albino?

2010-01-29T03:29:00.000-08:00

When your wife has given birth to an albino, many people will want to tell you that a child with albinism is a child like any other. People will comfort you in your presence but in your absence they will have many questions to ask themselves including why people should avoid marrying from your family.

What causes albinism? And what are the chances of one having an albino child? An albino is a person who lacks normal pigmentation, resulting with the skin and hair being abnormally white or milky and the eyes with pink or blue iris and a deep-red pupil. True, albinism is hereditary. It is not an infectious disease. It cannot be transmitted through contact, blood transfusions, or other vectors. Albinism is caused when the main principal gene prevents the body from making the usual amounts of the pigment melanin. Too much melanin is found in black people living near the equator. Most forms of albinism come about as a result of the biological inheritance of genetically recessive genes passed from both parents of an individual. Some rare forms of albinism are inherited from only one parent. Albinism has no cure. All one can do is buy creams and medicines to apply on their skins to prevent skin cancer and early aging of skin.

Couples have been giving birth to albinos for as long as man has existed. Once a child is born and found to be an albino, the matter is taken as top secret and secretly the child is thrown to the mountains and wait to die there as the child is considered as demons and bearer of bad luck.

Those who are fortunate to survive this are kept indoors and out of society for the rest of their lives – they are not taken to school and neither are they to mix with other children.

As more and more people have become educated, it is now possible for an albino child to be educated and to make it in life just like the other children. But this is without discrimination and stigma.

If there is one thing that seems to puzzle man, it’s albinism. The question is usually asked: why do people, including university professors, believe in superstition? The church and other organizations seem to place a lot of attention to the blind people whilst being silent to the people with albinism - It is indeed very important that at this time and age the cultural myths and superstitions surrounding albinos should be changed by the society and they should accept them as they accept the blind people. After all, everyone is created by the same God.

In some countries, a fully grown albino is considered as ready money for the taking. The albinos are believed to bring wealth and good luck. All one need is to get hold of the albino person and chop off limbs and pluck out specific organs which are then sold to the local witch doctors for top dollars. This means that even those albinos who are lucky to have been educated can not walk around freely because if they did they risks being kidnapped for their body organs.

Next time your wife gives birth to an albino, this is the time to give the wife and the new born child maximum support and attention. An albino child is a child just like any other child and the society should stop considering albinos as bearers of bad luck, demons or holders of body parts that can be mixed with traditional medicines to make other people rich. Do not abandon your albino child at birth or fail to take the child to school.

Is albinism the same as vitiligo ?

Albinism may at times be mistaken for wide spread vitiligo but they are two absolutely different and unrelated disease entities.
A few of the major differences are, that Albinism is an inheritable disorder, and is present at the time of birth, while Vitiligo is an acquired auto immune disorder of the pigment which starts somewhere after birth. Albinism is a stable disorder which does not spread or improve, while Vitiligo can improve and worsen with treatment as well as on its own.
Albinism is of two types; one in which the whole body including the eyes, the retina, the skin and the hair, all melanin containing areas of the body are involved, and the other which affects only the eyes. Vitiligo on the other hand starts as a patchy disorder which can take many different shapes.

As far as the basic abnormality is concerned, albinism results from a biochemical defect in the making of melanin, while Vitiligo results from autoimmune destruction of the pigment producing cells, the melanocytes.

The most important difference however is that Vitiligo can be improved with treatment while Albinism can not!

source of info: http://www.antivitiligo.com/vitiligo/albinism-and-vitiligo.html

One of the differences between albinism and vitiligo is that complete albinism is present at birth and does not change significantly. Vitiligo is a depigmenting condition that is not usually apparent at birth but can appear at any stage of life. It progresses until most of the body resembles the skin of a person with albinism. Vitiligo does not cover the body completely. There will always be slight pigmentation somewhere on the body. People with vitiligo often cover up and even out the remaining pigmented areas with special make-up used for covering scars or various skin conditions.
"Vitiligo (vit-ill-EYE-go) is a pigmentation disorder in which melanocytes (the cells that make pigment) in the skin, the mucous membranes (tissues that line the inside of the mouth and nose and genital and rectal areas), and the retina (inner layer of the eyeball) are destroyed. As a result, white patches of skin appear on different parts of the body. The hair that grows in areas affected by vitiligo usually turns white.
The cause of vitiligo is not known, but doctors and researchers have several different theories. One theory is that people develop antibodies that destroy the melanocytes in their own bodies. Another theory is that melanocytes destroy themselves. Finally, some people have reported that a single event such as sunburn or emotional distress triggered vitiligo; however, these events have not been scientifically proven to cause vitiligo.
About 1 to 2 percent of the world's population, or 40 to 50 million people, have vitiligo. In the United States, 2 to 5 million people have the disorder. Ninety-five percent of people who have vitiligo develop it before their 40th birthday. The disorder affects all races and both sexes equally.

The incidence of albinism in the world is said to be 1:17,000 to 1:20,000.The incidence is said to be higher in Indonesia but adequate research has not yet been undertaken.

Are persons with albinism blind?

No they are not but lack of pigment can lead to very low vision.

They also have:

Nystagmus which is pendular movements of the eye.

Photophobia which literally means fear of light

Typical red reflex in the papillary area.

Vision can be improved or preserved if a child with albinism receives medical care from an ophthalmologist early, before the age of 7 years.

However they may require assistance with large type text, high contrast written material, computers with large character display and copies of the teachers’ notes for close up reading.

Can children with Albinism attend regular schools?

Yes, children with albinism can attend regular schools

Albinism and life span

Albinism is associated with normal life span.

* It is an Autosomal Recessive genetic condition meaning the individual is born with albinism when both parents are carriers of the gene.
* A couple with normal pigmentation can have a child with albinism.
* A person with albinism can marry someone who is not a carrier of the gene and have children with normal pigmentation.
* 60%-70% of children with albinism so far are in single parent families(in all cases single mothers) or living with grandparents as women are often abandoned at the birth of a child with albinism. Genetic counseling is important when there is albinism in the family.

How can persons with albinism protect their skin?

Persons with albinism can protect their skin from the harmful rays of the sun through wearing protective clothing such as shirts or blouses with long sleeves and hats, and using sun screen with a high Sun Protection Factor (SPF).

What is the sun protection factor (SPF) that persons with albinism need to protect their skin?

The higher the sun protection factor the better. Any sun screen with an SPF factor of 30 and above offers adequate protection. However, even with the use of sun screen, persons with albinism are advised not to stay too long in the sun.

The Albinism community in Indonesia is soliciting support from other ophthalmologists and optometrists to ensure that every person with albinism wears glasses with UV protection.

An outcry from Maybell,
I'm a mother of 8 years old boy who has albinism..I live in Indonesia, and in here we don't have capable doctors who care enough about albinism( from my experience ) I have taken my son to see OP in S'pore, and he said that there is nothing we can do to help him..He only gave a prescription for glasses, but my son doesn't want to use them..He says, it's useless....He also already had magnifyer, monocular, but he says they are all useless..is it true? I really don't know what to do, since he is now facing so many subjects at school, and find so many difficulties to follow all the subjects..however he is such a smart boy, and thank God for that..

I want to know, if all of your kids are the same..he can only see subjects in 1m distance..he has to put the books or tv so close ( aound 10cm distance) to see them better. He is so photopobic. Sometimes i cry when i see him like that..what should i do?

I don't know have any friends who has the same problem here...Please Mums all around the world..share with me..maybe you have therapist, what do they do to your kids? I need to learn..or whatever kind of tools which can help them better..

God Bless U All...

Maybelle
http://community.albinism.org/forums/p/10490/45054.aspx#45054

Positive Exposure Inside Edition Part I

2010-01-28T20:18:00.001-08:00

Cindy Gibson has albinism, a condition so rare that for 29 years she never met another person with pink-white skin and pure white hair like hers.

That changed one morning when she met Scott Gibson in a shopping mall in Kitchener, Canada.

"Finally, someone understood what I felt," she said. "We really clicked."

Scott and Cindy, now married, are among the 350 people attending the National Organization for Albinism and Hypopigmentation conference at the Arlington Park Hilton.

The conference, which meets every other year, offers a rare opportunity for people with albinism to discuss everything from makeup and sunscreen to teasing and job discrimination.

Famous people with albinism

* Michael Bowman, an American actor (Me, Myself & Irene)[54]
* Connie Chiu, the first female albinistic model in the mainstream fashion industry; a photo model for Jean-Paul Gaultier[55]
* Cano Estremera, a Puerto Rican salsa musician[55]
* Winston "Yellowman" Foster (also known as "King Yellowman"), a Jamaican dancehall musician
* G. Harishankar, a Carnatic khanjira drummer[55]
* Dennis Hurley, an American film producer and actor (The Albino Code, Running with Scissors), writer, comedian and singer[54]
*
Stanley "Sataan" Kaoni, 2002
Stanley Kaoni (also known as "Sataan"), a former Solomon Islands militant leader (Kaoni has light blonde hair and pale facial skin with some evidence of vitiligo, and appears to have developed some pigmentation especially on the arms; his particular type of albinism is likely to be OCA1b.)[54][56]
* Zephania Kameeta, Namibian religious and political leader.
* Salif Keita, a Malian popular musician[55]
* Krondon, an American rapper and hip hop musician/producer, with the trio Strong Arm Steady
* Malford Milligan, an American blues and soul singer[57]
* Corrie "Al Beeno" Moodie (also known as "Prince Yellowman"), a Jamaican dancehall musician now living in Canada[55]
*
Mem Nahadr photo by Christophe Alary
Mem "M" Nahadr, an African-American performance artist, author, composer, off-broadway producer, and jazz vocalist.[55]
* Ali "Brother Ali" Newman, a hip hop artist from Minneapolis, Minnesota
* Hermeto Pascoal, a Brazilian jazz musician
* Willie "Piano Red" Perryman, an American blues musician[55]
* Shaun Ross, the first male albinistic model in the mainstream fashion industry, featured in British GQ, i-D Magazine and Another Man among other periodicals, and started his career when he was 16
* Seinei, 22nd Emperor of Japan (5th century)
* William Archibald Spooner, an Anglican priest[55]
* Darnell Swallow, a contestant on Big Brother 9 UK (2008); noted for discussing albinism and his desire for acceptance with his on-show housemates, and wearing a jumper (sweater) with the words "Don't Label Me. Respect Me"
* Victor Varnado, African American stand-up comedian and actor.[55]
* Levan Wee, the lead singer of Ronin, a Singaporean band[58]
* Redford White, a Filipino actor and comedian
* Edgar Winter and Johnny Winter, American blues-rock musician brothers[55]
* David Wrench, a Welsh-born electronic musician[59][60]
* Zāl (Persian: زال), a warrior of ancient Persia (present-day Iran), mentioned in The Book of Kings and Shahnameh. Today, in Persian zaal is a term for albinistic people.

source : http://en.wikipedia.org/wiki/Albinism_in_popular_culture

Albinisme (albino)

2010-01-28T18:57:00.000-08:00

KEUNIKAN YANG TERCIPTA DALAM PENDERITAAN HIDUP
Excerpted from Anang's blog

Ia memang terlahir dengan kulit putih, meski kedua orang tuanya bukan dari ras kaukasoid layaknya orang Eropa pada umumnya. Rambutnya pun putih seperti uban padahal usianya belum menginjak dua digit. Bulu mata dan semua yang ada padanya putih sama sekali tak mencirikan kedua orang tuanya yang seorang warga Indonesia. Hanya saja ada satu ciri yang sangat kental dengan fisik orang Indonesia, hehehe.. Hidung ala kadarnya khas Indonesia sangat mencolok dari wajah 'bule'-nya. Tidak bisa menipu!

Aris
Namanya Aris, dan tidak ada hubungannya dengan Aris pengamen KRL yang sedang pentas di ajang spektakuler Indonesian Idol tahun ini hehe... Aris yang ini adalah seorang murid sekolah dasar yang baru menginjak kelas satu menjelang kenaikan kelas menuju kelas dua. Ia hidup di kawasan yang jauh dari perkotaan. Ibu dan bapaknya hanya seorang petani biasa di kampung. Kebetulan Aris adalah murid dari Ibuku yang mengajar di sekolah tersebut. Tinggi badannya sama atau seukuran dengan teman-teman sebaya lainnya. Hanya saja, kulit putih dan semua yang serba putih itu memudahkan orang untuk membedakan dari teman-temannya.

Budaya orang Indonesia yang umumnya memiliki kulit sawo matang adalah menginginkan kulitnya lebih putih. Begitupun dengan orang bule yang aslinya kulitnya putih berjemur di terik matahari dengan hanya sehelai kain yang membalut piranti vital mereka, atau malah sama sekali tak memakai seperti video voyeur hasil bidikan kameramen usil bin jahil yang mengkoleksi kemolekan tubuh yang tergelar di atas pasir itu hahahahaha....

Ataukah ini mungkin memang tanda-tanda kebesaran dari Yang Maha Segala, bahwa kita harus mensyukuri apa yang telah kita punya. Ia menciptakan keberagaman untuk saling mengenal. Kulit hitam, putih, merah, dll. Lalu, diciptakannya sosok manusia dengan wujud fisik yang jauh berbeda dari keluarganya, khususnya ayah dan ibu yang melahirkannya. Yang sesungguhnya sosok 'aneh' ini memang diciptakan dengan ketidaksempurnaannya agar orang-orang percaya pada kebesaran-Nya.

Aris, diciptakan dengan kekurangan pada wujud uniknya. Ia terlahir sebagai albino atau albinism. Albino disebabkan kekurangan pigmen atau zat warna yang ada pada kulit, mata dan rambut. Merupakan sifat turunan yang diwariskan dari gen orang tua. Karenanya, ia tak bisa bergerak bebas seperti teman sebayanya karena kulit dan matanya sangat rentan dan sensitif terbakar terhadap sinar matahari. Sehingga jarang sekali melihatnya bermain-main di bawah cahaya mentari yang terik menyengat. Untuk keluar rumah pun harus memakai jaket dan kacamata hitam yang bisa menghindarkannya dari serangan sinar matahari. Pun matanya pun memiliki kelainan seperti rabun dan juling serta tak tahan melihat cahaya terang.

Sementara itu, tak sedikit anggapan yang salah tentang albino ini di masyarakat kita. Mitos ini misalnya albino adalah keturunan setan, atau karma perbuatan orang tuanya, penyakit menular, dan bahkan ada juga yang mempercayai bahwa seorang albino ini memiliki kekuatan magic, supranatural atau gaib. Beginilah kultur masyarakat kita yang kadang mengkeramatkan sesuatu yang 'unik' dan 'aneh' tapi nyata. Budaya purba yang percaya hal-hal klenik masih melekat erat.

Menjadi orang albino seperti Aris ini pun tidak mudah. Kelainan yang membuatnya tampak berbeda dengan orang sekitarnya malah terkadang membuatnya stress dan tertekan, karena selalu menjadi pusat perhatian orang.

Satu kata buat Aris untuk tetap sabar dan tegar menjalani hidup ini. Jadikan kekuranganmu sebagai kelebihan yang orang lain tak memilikinya.

Albinisme (albino)
DEFINISI
Albinisme bukanlah penyakit kulit , melainkan suatu kelainan keturunan yang jarang ditemukan dimana tubuh tidak dapat membentuk melanin. Albinism is not a skin disease it is a genetic condition ,it also effects hair and eyes.

Orang yang menderita albinisme disebut albino.

PENYEBAB
Dalam keadaan normal, suatu asam amino yang disebut tirosin oleh tubuh diubah menjadi pigmen (zat warna) melanin.
Albinisme terjadi jika tubuh tidak mampu menghasilkan atau menyebarluaskan melanin karena beberapa penyebab. Secara khusus, kelainan metabolisme tirosin menyebabkan kegagalan pembentukan melanin sehingga terjadi albinisme.

Albinisme bisa diturunkan melalui beberapa pola, yaitu resesif autosom, dominan autosom atau X-linked.

# Kelainan lainnya yang berhubungan dengan albinisme parsial atau albinisme terlokalisir (hilangnya pigmen hanya pada daerah tertentu): Sindroma Waardenberg (rambut di dahi berwarna putih atau salah satu maupun kedua iris tidak memiliki pigmen)
# Sindroma Chediak-Higashi (pigmentasi kulit berkurang secara difus tetapi tidak total)
# Sklerosis tuberosa (terdapat bintik putih yang kecil dan terlokalisir)
# Sindroma Hermansky-Pudlak (albinisme menyeluruh disertai kelainan perdarahan).

GEJALA
Albinisme komplit terjadi jika sama sekali tidak ditemukan pigmen pada rambut, mata dan kulit (disebut juga albinisme okulokutaneus tanpa tirosin), sehingga rambutnya putih, matanya pink dan kulitnya pucat.
Merupakan jenis albinisme yang paling berat.
Penderita memiliki rambut, kulit dan iris mata yang berwarna putih, disertai gangguan penglihatan.
Penderita juga mengalami fotofobia (takut sinar matahari) dan mudah mengalami luka bakar karena matahari serta bisa menderita kanker kulit karena tidak memiliki melanin yang berfungsi melindungi kulit terhadap sinar matahari.

Albinisme okuler adalah jenis albinisme yang hanya menyerang mata.
Warna kulit biasanya normal dan warna mata juga masih dalam batas normal, tetapi pemeriksaan retina menunjukkan bahwa retina tidak memiliki pigmen.

Albinisme komplit biasanya disertai oleh beberapa dari gejala berikut:
- pergerakan mata yang sangat cepat (nistagmus)
- strabismus (juling)
- penurunan ketajaman penglihatan
- kebutaan fungsional.

DIAGNOSA
Diagnosis ditegakkan berdasarkan gejala dan hasil pemeriksaan fisik.
Untuk memperkuat diagnosis bisa dilakukan pemeriksaan retina ole dokter ahli mata.

Elektroretinogram adalah suatu pemeriksaan yang dilakukan untuk menentukan gelombang otak yang dihasilkan oleh cahaya di dalam mata dan bisa menunjukkan adanya kelainan pada sistem penglihatan dari penderita albinisme okuler.

PENGOBATAN
Kulit dan mata harus dilindungi dari sinar matahari.
Kacamata anti UV bias meringankan fotofobia.

Resiko luka bakar karena matahari bisa dikurangi dengan cara menghindari sinar matahari langsung, memakai tabir surya atau memakai pakaian pelindung.
Sebaiknya digunakan tabir surya dengan SPF (sun protection factor yang tinggi.

PENCEGAHAN
Seseorang dengan riwayat keluarga albinisme sebaiknya melakukan konsultasi genetik agar keturunannya tidak ada yang menderita albinisme.

How to Tackle Any Tough Time and 8 Ways to Ease Your Worries

2010-01-27T00:21:00.000-08:00

By Abigail Cuffey

Bouncing back after a rough experience like job loss, divorce or death in the family is difficult. But it’s possible to become more resilient when things get shaky by adopting four key habits, says Robert Wicks, PsyD, author of Bounce: Living the Resilient Life.

1. Debrief Daily
Right before you go to bed, think about the ups and downs of your day. This helps you recognize what particularly stressed you out or upset you, as well as what lifted your mood. Identifying your triggers will prepare you to deal with them in the future.
How to Tackle Any Tough Time

How to Tackle Any Tough Time

2. Be Good to Yourself
Find things that renew and encourage you, and enjoy at least one of them daily. It could be exercise, a hobby, time spent with a pet—whatever makes you happy will distract you from a stressful situation.

3. Live In the Moment
Stop fretting about what will happen in the future and pay attention to what’s going on in your life at that very second. When you’re eating dinner, don’t ruminate over your job hunt. Instead, focus on the tastes and smells right in front of you.

4. Give Thanks
Take a step back and recognize what you’re grateful for, then take a few minutes to jot it down. Otherwise, the only perspective you’ll have will be negative.

8 Ways to Ease Your Worries
Tough times mean changing your attitude and actions to gain some peace of mind
By Salley Shannon Posted September 03, 2009 from Woman's Day; October 6, 2009
8 Ways to Ease Your Worries

We know Mama was right when she said, "Money can't make you happy." But we also know financial worries can shake us up. As we wait for the economy to turn around, is there anyone who isn’t feeling anxious? If you’ve been laid off and there’s no job in sight, you may feel like life is whirling further out of control with every hoarded dollar you spend.

But that “so-scared-I-can’t-breathe” feeling doesn’t have to take over. You can stop it by deliberately tuning out fear and turning up the volume on other things like love, faith and community. Focusing on life’s positives can help you feel grounded.

“We tamp down fear by noticing the blessings and opportunities the economy has handed us,” says the Most Rev. Katharine Jefferts Schori, the first female presiding bishop of the Episcopal Church. “Having less money for eating out can result in healthier meals eaten with family, and more time to build and strengthen relationships.” Being aware that there are others who are worse off may spur you to volunteer.

Here’s another thing: A financial challenge such as an impending foreclosure, a layoff, a house worth less than the mortgage, is just a problem to get through. How we deal with that problem may shape us for good or ill, but the fact that it happened to us says nothing—we’re the same people we were before.

Even in the depths of the Great Depression, when 1 American in 3 was out of work and there were breadlines everywhere, people still managed to fall in love, play with their children, sing along with the radio, enjoy life. A lesson we can learn from those times is that there are always pockets of joy, and many ways to foster inner peace.

1. Accept that troubles are part of life. With all the focus on celebrity lifestyles during the past decade or so, “it’s almost as if we’ve been told life is supposed to be perfect all the time, and something is wrong with us if it isn’t,” says Victoria Moran, author of Living a Charmed Life. “That’s not true!”

Sometimes you just happen to be the person whose car runs over a nail in the road, and you end up with a flat tire. You didn’t do anything to deserve it. Being careful won’t eliminate every last chance of picking up a nail. Neither will being nice and working hard on your driving skills.

In the same way, you aren’t any more unlucky than anyone else if the economic slowdown is creating new difficulties for you. The answer to “Why me?” is “Why not me?” When you keep reminding yourself that life has its ups and downs, you’re better able to “change your default setting,” as Moran puts it. “All of a sudden, ‘Everyone’s healthy, and we’re safe and content, even now,’ becomes as good as ‘Rich and getting richer,’” she says.

2. Don’t obsess over the news. Molly Peter, a real estate agent and mother of four in Bethesda, Maryland, never watches the news anymore. “It’s surprising how much more positive I feel every day,” she says. Instead, she listens to music or an audiobook while in the car or cooking.

This technique is OK to use as long as you’re not in denial about the upheavals going on, says Sonja Lyubomirsky, PhD, a University of California, Riverside, professor of psychology and author of The How of Happiness. Of course you want to stay informed—just don’t let it overwhelm you. “Your life will be happier if you focus on affirming things,” rather than things that depress you, says Dr. Lyubomirsky.

3. Reach out to friends. The way you cut fear down to size, says Rev. Dr. Forrest Church, author of 25 books including Freedom from Fear, is to avoid the urge to isolate yourself when trouble hits. It’s crucial to be with people, and by “people,” he means more than your immediate family and the dog.

But that’s not what most of us tend to do. When we get laid off, we feel singled out and helpless. We may be furious, bitter or sad. Most certainly, we feel embarrassed. So we hunker down and hide.

“You can’t let yourself do that,” Dr. Church says. “When you do, you get into a conversation with your fear, and it builds.” You may even start blaming yourself. “One neighbor at a time, one friend at a time, break out of your isolation every day,” he says. “When we start engaging with other people, we find ways around that wall that’s in front of us, solutions and ideas we might not have seen by ourselves.”

4. Cultivate gratitude, now more than ever. You may be eating more rice and beans these days, but if there’s food on the table, that’s a blessing. You can be grateful that your son is learning to read, for your health, for the neighbor who waved as she mowed her lawn.

In a 2002 study conducted at the University of Pennsylvania, researcher and psychology professor Martin Seligman, PhD, asked severely depressed people to go to a website once a day, before they went to bed, and write down three good things that had happened that day and why. (These were people who were so depressed that just getting out of bed might be worthy of the list.) Listing three good things daily was their only treatment. Within 15 days, 94% felt less depressed.

The study has been repeated several times since. Every time, researchers found that being thankful actually made the subjects feel happier.

“Saying thank you is powerful,” says Rabbi Julie Schonfeld, who recently became the first woman to become executive vice president of the Rabbinical Assembly, representing Conservative Jewish rabbis worldwide. “It turns us from a mindset of lack to a mindset of gratitude for the good things in our lives.”

5. Decide not to worry. Studies have found that some people worry 10 times more than other people do, although their life circumstances may not be much different from those of people who hardly worry at all. Not surprisingly, the champion worriers were more likely to report being unhappy than those who worried less. Some people are predisposed to worry more than others, says Boston College psychologist Maya Tamir, PhD, but we do have some control over it, meaning we can choose whether to worry or not. Deciding not to worry is not the same as pretending everything is fine. By all means, be practical. But once you’ve made a plan for “what if I get laid off,” don’t continue to fret about it in your head or talk about it to others, advises Dr. Lyubomirsky.

6. This goes for dwelling, too. Dwelling, or replaying a stressful event over and over in your head, can keep you stuck. Dr. Lyubomirsky has documented the negative effects of dwelling. Psychologists call this rumination, and there are tricks to stopping it, she says. One is to see whether you have any worry triggers and to distract yourself when you begin to ruminate.

Try different tactics until you can turn off worry the way you change a TV channel. Solitary exercise may not help unless you work out so hard you don’t think about other things. “I used to go for a run when I found myself ruminating,” reports Dr. Lyubomirsky. “Well, running made me do it more!” Good bets: reading to a child or watching a funny movie.

Another trick she finds effective: Make a worry appointment with yourself. Plan to worry from 9 to 9:30 a.m., for example, and if you find you’re worrying at any other time during the day, tell yourself to put it on hold. Silly, maybe—but it works, Dr. Lyubomirsky says.

7. Work at staying upbeat. In her latest book, Dr. Lyubomirsky makes an interesting point: A growing body of research shows that our sense of well-being is about 50% dependent on a happiness setpoint. This factor is genetic, much like a weight setpoint. Of the rest, only about 10% is circumstantial: big income or small, married or single, gorgeous or plain. “What’s exciting is that the other 40% percent is under our control,” she says. “It depends on our daily, intentional activities.” Even something as simple as smiling can lift your spirits. “Staying positive is really important, right down to the effect it has on your immune system,” Dr. Lyubomirsky says.

8. Take part in your faith. Worship offers transformative power of its own because it “takes us out of ourselves,” says Rabbi Schonfeld. A faith community can feel like a supportive extended family. Going to the church or synagogue during the week to meet friends or volunteer our time can be a mission when we have no job to go to daily or we don’t know what to do next. And there are a lot of opportunities to help with service and outreach projects.

“Miraculous things can happen when we join hands to help one another,” says Rabbi Schonfeld. “It isn’t just the good works, though they are important. Working together also relieves our fear and anxiety, and gives us a new surge of energy.” Another benefit: We can’t shelter our children, especially our older children, from the troubles related to the present economy. “But we can let them see us acting with a sense of faith and purpose,” which shows them that we’re able to cope, says Rabbi Schonfeld.

Maybe you just flat-out know you need help. If you haven’t been involved with a church before, turning up when you need groceries or you just got a pink slip can feel embarrassing, even hypocritical. Do it anyway, suggests Rev. Jefferts Schori. “Many times we change our lives for the good, or begin a spiritual journey, when we’re feeling the most down and vulnerable,” she says.

Listen to Slow Tunes

Slower-paced music can lower your heart rate and blood pressure. So pick up some soothing CDs or make a “relax” playlist for your iPod.

Give Yourself a Time-Out

Set the alarm on your phone for 5 minutes, find a quiet place (even if it’s a bathroom stall) and just sit and breathe deeply, recommends Aimee Raupp, author of Chill Out & Get Healthy.

Burn a Scented Candle

Choose lavender, lemon or mango, because they contain linalool, a naturally occurring fragrance that reduces the activity of genes normally elevated in stressful situations, according to Japanese researchers.

Laugh—It Really is the Best Medicine

It temporarily increases your heart rate and blood pressure, and then when they drop, you feel relaxed, according to experts at the Mayo Clinic. Watch your favorite sitcom or funny movie, or check out a few short hilarious clips on YouTube.

Lend a Hand

You don’t need to join the Peace Corps to get a “helper’s high,” says Stephen Post, PhD, author of Why Good Things Happen to Good People. Little things, like carrying groceries for a neighbor, work too.

Grab a Friend and Get Walking

It’s a stress-fighting double whammy: Exercise improves your mood, and a recent study found that working out with a buddy leads to a greater production of endorphins.

Listen Up

A recent study found that when people gave emotional support to others, they felt less stressed themselves. Call a friend who’s having a rough time and let her vent.

Chew a Piece of Sugarless Gum

It may help lower levels of cortisol, a stress hormone, according to an Australian study.

Loosen Up, Literally

Restrictive clothes—especially if they put pressure on your stomach—cause your muscles to tighten, which in turn makes you tense, says Kellye Davis, author of The Bliss Principle. So lose the skinny jeans.

Myths and fallacy of people with albinism

2010-01-26T23:45:00.000-08:00

Cultures
around the world have developed many myths and superstitions regarding people with albinism. Some of the common misconceptions are:

Cultures around the world have developed many myths and superstitions regarding people with albinism. Some of the common misconceptions are:

Albino individuals of a species are sterile. This is not true as albinos are capable of reproduction

In Zimbabwe, it is thought that having sex with a woman with albinism will cure a man of HIV. Many women with albinism in the area have been raped.

In Jamaica people with albinism are regarded as cursed, and therefore degraded.

In some cultures, people with albinism are thought to have magical powers, or are able to tell the future.

It is also thought by many that people with albinism live a short life which is not true.

People with albinism are retarded or deaf.

Albinism results from inbreeding or the mixture of two races.

Persons with albinism always have red eyes.

Persons with albinism are totally blind.

Albinism is contagious.

What Causes Albinism?

2010-01-26T22:13:00.000-08:00

What Causes Albinism?

Albinism refers to hypopigmentation in the hair, skin, or eyes (in the last case, it’s accompanied by a loss of vision). Its forms vary by the location and amount of pigment loss and are usually rare. The most common type of albinism, which involves moderate but not complete pigment loss, occurs in one out of 15,000 people internationally.

The loss of pigmentation is caused by either (a) melanin production or distribution problems or (b) regeneration problems in melanosomes, the organelles that house melanin. There are a number of genetic mutations that can cause melanin-related abnormalities; each mutation presents with distinct phenotypic features.
Types of Albinism

There are several forms of albinism. The first, Oculocutaneous albinism (OCA) type 1, involves the absence of melanin in the skin, hair, and eyes as well as vision problems. (If you study the word oculocutaneous, this makes sense—both the eyes (oculo) and skin (cutaneous) are affected.) OCA types 2, 3, and 4 are milder forms of OCA type 1: they involve partial, not total, pigment loss in these areas.

Ocular albinism affects melanin production only in the eyes, and presents with visual difficulties.

Chediak-Higashi Syndrome (CHS) involves total or near-total loss of skin, hair, and eye pigmentation, like people with OCA type 1. The difference lies in the quality of a person's hair, which looks metallic; their respiratory problems; and further hypopigmentation in leukocytes, platelets, and reticular cells. This last deficiency manifests as well in another form of albinism, Hermansky-Pudlak Syndrome (HPS).

Griscelli Syndrome (GS), involves mild melanin loss as well as immunological and neurological defects.
Genetics of Albinism

Each type of albinism is caused by genetic mutations. OCA types 1, 2, 3 and 4 are all inherited as autosomal recessive traits (they are not located on sex chromosomes and must be present in both gene copies to be inherited). These four types of OCA result from mutations to the TYR, OCA2, TYRP1, and SLC45A2 genes, respectively. Each of these genes, when expressed normally, functions in the production of melanin. Individuals with mutations to these genes can’t synthesize melanin normally and present with the hypopigmentation characteristic of albinism.

Unlike the four types of OCA, OA is a sex-linked trait, caused by a mutation to the X chromosome. (As a result, OA is more common in males, who only have one X chromosome and thus need only one mutant gene, rather than women’s two.) CHS, HPS, and GS are all autosomal recessive, caused by mutation to the LYST, HPS, and RAB27A genes. LYST affects the Golgi body’s functionality (which is crucial to melanosome production), while HPS and RAB27A affect protein synthesis.
The Bottom Line

All forms of albinism involve a loss of pigmentation. OCA types 1, 2, 3, and 4; CHS; HPS; and GS all are inherited as autosomal recessive traits, while OA is inherited on the X chromosome. Each results from difficulties in synthesizing or distributing melanin.

Is albinism a disability? handicap? neither? or both?

The Americans with Disabilities Act defines disability with respect to an individual as "a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment." Albinism involves a visual impairment and in this light can be called a visual disability. A handicap can be defined as "the obstacles a person encounters in the pursuit of goals in real life, no matter what their source." Thus a person with a disability may or may not be handicapped in pursuing the life they want to live."

Albinism itself is not a disability, however characteristics of albinism may be a considered a disability.

Albinism in humans referes to the lack of or limited amounts of pigment produced in the hair, skin, and or eyes.

Sight being one of our five senses and a major dependence for those who have been blessed to have it, can result in loss or reduction of the quality of life and independce if it is loss. So to be born that way may be adaptable but we have to face the fact that there are some things you can not do with out your sight. Driving is one of those major life things. Although technology is rapidly reducing that disadvantage for persons with low vision, there are others who can not benefit from that technology.

The visual impairment associated with albinism due to lack of pigment developing in the eyes are: difficulty seeing at a distance. With the vision being distorted as a result of the lens not being able to reflect the light projected through the iris. Since the pigment would produce the opaque color needed to reflect the light it would be impossible to for the eye to cast a clear image. Always resulting in some sort of distortion of what we are able to see. I think that can affect the quality of ones life and could be considered a disability on those terms.

A disability is a handicap and they are one in the same. Lables mean only what we interput them as. Because albinism is generally accompanied by a visual impairment it can be considered a disability, because with out albinism it is possible that one could have 20/10 vision, but with it, research indicates 20/50 is the best vision possible and that is with correction. Since an individual with much better vision may be able to easily still do many more things than someone with less vision that is why albinism is considered a disability on a case by case basis.

The primary disability is the vision impairment and the serverity of it makes a differnce. Legal blindness is classified at 20/200, so any better vision doesn't count.

So my final answer is Albinism "can" be used as an apparent determination of a disability due to the visual impairment that is associate with the condition which results little to no pigment developing in the "eyes".(Nystagmus is an added diddy that reduces the ability to focus even more, it to is recognized as an albinism trait and determining factor of the condition.)

Rae Lowery
Vice President
The Albinism Alliance Group

albinisme

2010-01-26T21:43:00.001-08:00

what is albinism ? Profile of people with albinism

2010-01-26T21:43:00.000-08:00

Albinism

DEFINITION

Albinism: A group of genetic disorders in which there is partial or total lack of the pigment melanin in the eyes, skin, and hair.
See also: Albinism, oculocutaneous; Hermansky-Pudlak syndrome.

Albinism is a defect of melanin production that results in little or no color (pigment) in the skin, hair, and eyes.

Albinism is a recessively inherited condition affecting about one in 17,000 people. A person who inherits albinism usually inherits a recessive gene for the condition from each parent, though this is not the case in ocular albinism.

Albinism appears in different forms and may be inherited by one of several modes: autosomal recessive, autosomal dominant, or X-linked inheritance.

Albinism refers to a group of genetic defects that cause decreased levels of the pigment, melanin, which forms color in skin, hair, and eyes. Low levels of melanin cause very light skin tone and blond-white hair.

Albinism is a defect of melanin production. This defect results in the partial or full absence of pigment (color) from the skin, hair, and eyes.

Albinism
Dr Trisha Macnair
Albinism is a group of conditions characterised by a lack of colour in the skin, hair and eyes.

Albinism, an inherited disorder, is caused by the absence of the pigment melanin and results in no pigmentation in skin, hair, or eyes. In albinos, their body has an abnormal gene, which restricts the body from producing melanin.

Albinism is present at birth, although some types of the disorder may not be easily identified in infants. Although there's no cure for albinism, people with the disorder can take steps to improve vision and avoid too much sun exposure.

Albinism
This rare, inherited disorder is characterized by a total or partial lack of melanin in the skin, compared to the pigmentation of siblings and parents. Albinos (people with albinism) have white hair, pale skin, and pink eyes.

Albinism refers to a group of inherited conditions. People with albinism have absent or reduced pigment in their eyes, skin or hair. They have inherited genes that do not make the usual amounts of a pigment called melanin which is essential for the full development of the retina. Lack of melanin in development of the retina is the primary cause of visual impairment in albinism. In the USA it is estimated that one person in 17,000 has some type of albinism.

There are two major categories of albinism (overlap of these categories often occurs):

Ocular Albinism (OA) is divided into two types according to the inheritance pattern:
autosomal recessive OA occurring equally in males and females, and X-linked OA with symptoms occurring primarily in males. In the X-linked cases, mothers carry the gene and pass it to their sons. Although the mothers usually have normal vision, they have subtle eye changes that can be identified by an ophthalmologist. If a woman does carry the gene, with each pregnancy there is a one in two chance of having a son with X-linked ocular albinism. For specific information, families should seek the advice of a qualified genetic counselor.

Oculocutaneous Albinism (OCA, involves the lack of pigment in the hair, skin and eyes. Each parent must carry the gene for this form which follows an autosomal recessive inheritance pattern, meaning there is a one in four chance at each pregnancy that the baby will be born with albinism. Within OCA there are two primary types of albinism.
Type 1 (formerly known as Tyrosinase Negative) involves the complete lack of pigment. These children have white skin and hair and moderate to severe visual impairment. Children with
Type 2 (formerly known as Tyrosinase Positive) have various amounts of pigmentation, yellow or blonde hair and usually less severe visual impairment.

Secondary OCA
The appearance of albinism may indicate the presence of other rare conditions that require special management. Hermansky-Pudlak Syndrome (HPS) involves a platelet defect that results in susceptibility to bleeding and bruising. Aspirin and aspirin-like drugs should be avoided, as they may convert a mild bleeding disorder into a severe one. HPS can be identified by a specialized test involving electron microscopy of the platelets. Chediak-Higashi Syndrome is associated with a white blood cell problem leading to a susceptibility to bacterial infections. Prior to a surgical procedure for persons with these rare forms of albinism, specific tests for bleeding dysfunction and white blood cell abnormalities should be performed.

Albinism, oculocutaneous: An hereditary disorder characterized by deficiency of the pigment melanin in the eyes, skin and hair. The lack of eye pigment causes photophobia (sensitivity to light), nystagmus, and decreased visual acuity.

Oculocutaneous albinism is conventionally classified as to whether it is tyrosinase-negative or tyrosinase-positive. In the tyrosinase-negative class, there is absence of the enzyme tyrosinase. In the tyrosinase-positive class, tyrosinase is present but it cannot enter pigment cells to do its job and make melanin.

There are a number of specific types of oculocutaneous albinism, all of which are inherited in an autosomal recessive manner:

* Type IA is characterized by absence of tyrosinase with complete absence of melanin, marked photophobia, and nystagmus. It is due to mutation of the tyrosinase gene (TYR) on chromosome 11q.
* Type IB has reduced activity of tyrosinase. It has been called yellow albinism. The child looks "dead white" at birth and has the usual eye problems, but soon develops normal skin pigmentation and yellow hair.
* Type II has normal tyrosinase activity. It is the most common type of oculocutaneous albinism. The hair darkens and freckles and nevi (moles) develop normally on the skin. The disorder is due to mutation of the oculocutaneous albinism gene (OCA2) on chromosome 15q.
* Type III is characterized by absence of tyrosinase with the presence of pigmentation of the iris in the first decade of life. It is due to mutation of the tyrosine-related protein-1 gene (TYRP1) on chromosome 9p.
* Type IV is characterized by normal tyrosinase and is due to mutation of the MATP gene on chromosome 5p. MATP stands for membrane-associated transporter protein.

Hermansky-Pudlak syndrome: Abbreviated HPS. A genetic disorder characterized by albinism (with lack of pigment in the skin or eye), bruising and prolonged bleeding (due to defective blood platelets), and fibrosis of the lungs. There is occasionally also inflammatory bowel disease and impaired kidney function. All HPS patients suffer from varying degrees of albinism. The lack of pigment in the eye impairs their vision and often leads to involuntary rhythmic eye movements called nystagmus. The most serious health problems in HPS are the tendency to bruise easily and bleed and the progressive deterioration in lung function.

The reason HPS patients bleed too easily is that their blood platelets are deficient in so-called dense bodies. These subcellular organelles release their contents to make other platelets stick together and form a clot. Without dense bodies, the time needed for a clot to form is abnormally slow. Women with HPS may therefore need medical intervention during their menstrual cycles or at childbirth. HPS patients are advised to avoid blood anticoagulants such as aspirin. Drugs are needed to prevent excessive bleeding during dental extractions and other surgical procedures. Inflammatory bowel disease with the onset of symptoms between 10 and 30 years of age can complicate HPS and usually responds poorly to therapy. The lung problems in HPS begin with restrictive disease and then progress inexorably to death, usually in the fourth or fifth decade.

HPS patients have a biochemical storage disorder. They accumulate a fatty product called ceroid lipofuscin. This causes inflammation in tissues such the lungs. Prolonged inflammation leads to fibrosis, which in the case of the lung impairs its ability both to expel air and to exchange carbon dioxide for oxygen.

HPS is inherited as an autosomal recessive condition. HPS occurs in many countries. It is especially common in certain areas in the Swiss Alps and Puerto Rico. In NW Puerto Rico, 1 in every 1800 individuals is affected with HPS and 1 in 21 persons carries the HPS gene. HPS is genetically heterogenous. It is not a single genetic entity. Mutations in different genes on different chromosomes are now known to lead to HPS. Gene loci for HPS have been identified on chromosomes 3, 5 and 10. Puerto Ricans with HPS have been found to have mutations in the HPS1 gene and, less often, in the HPS3 gene. Only half of individuals with HPS not from Puerto Rico have mutations in HPS1 and very few do in HPS3; and a number have mutations in another locus, HPS4.

Patients with HPS2 have mutations in a protein called AP-3, which is involved in directing the movement of proteins inside cells. AP-3 is needed by T cells to kill infected cells. T cells deficient in AP-3 due to HSP-2 cannot kill target cells. The lytic granules required for killing fail to move towards the contact site between the T cell and the target cell. AP-3 therefore appears to be involved in mediating granule movement inside killer T cells.

The syndrome was first described in 1959 and is named after its discoverers, the Czech internists F. Hermansky and P. Pudlak who described 2 unrelated albinos with a lifelong bleeding tendency and peculiar pigmented cells in the bone marrow. One patient was male and the other female, both 33 years old.

HPS is also known as albinism with hemorrhagic diathesis and pigmented reticuloendothelial cells and as delta-storage pool disease.

DIAGNOSIS

The diagnosis of albinism can be challenging. If albinism is suspected, concerns should be communicated to the pediatrician who will refer the family to a pediatric ophthalmologist. If a child has OCA, diagnosis will often be based first on the fair color of the child's skin and hair. A diagnosis of albinism may be suspected when a child develops rhythmic, involuntary eye movements (nystagmus) within the first few weeks of life and the eye exam identifies:

* if light passes through the iris (transillumination)
* the underdevelopment of the central retina (foveal hypoplasia), and
* the absence of melanin pigment in the eye.

While hair bulb testing has been used as a diagnostic test for albinism in the past, newer, more accurate genetic tests are now available for diagnosis, classification, and prenatal genetic counseling. The visual evoked potential test (VEP), designed to identify the misrouting of retinal fibers of the optic nerve, can be valuable in providing a specific diagnosis.

CHARACTERISTICS

* Low Vision (visual acuity between 20/50 and 20/800)
* Sensitivity to bright light and glare (photophobia)
* Rhythmic, involuntary eye movements (nystagmus)
* Absent or decreased pigment in the skin and eye and sensitivity to sunburn (ultraviolet light) that could lead to skin cancers or cataracts in later life
* "Slowness to see" in infancy
* Farsighted, nearsighted, often with astigmatism
* Underdevelopment of the central retina (foveal hypoplasia)
* Decreased pigment in the retina (blonde fundus)
* Inability of the eyes to work together (absence of stereo vision)
* Misrouting of the nerve pathways from the retina to the brain
* Light colored eyes ranging from lavender to hazel, with the majority being blue
* Strabismus, with both vertical and horizontal deviations

VISUAL AND BEHAVIORAL CHARACTERISTICS

* Infants with albinism may behave as if they are not seeing during the first weeks of life and gradually become visually attentive. This is now a well-documented condition.
* Additional energy and effort a child uses to process visual information can cause fatigue and irritability, worsening nystagmus.
* Children typically exhibit an eye and/or head position that allows them to slow down or stop their nystagmus (null point).
* Children may use one eye at a time for looking.
* They may have an absence of stereo vision contributing to depth perception problems.
* Children bring objects close to their eyes to see more clearly.
* Even with glasses or contacts, vision will not correct to normal.
* Occasionally a child's eyes will look pink or red due to a reflection on the back of the eye (retina).
* The following environmental factors can have a significant influence on the child's ability to see: changes in lighting from various light sources, the position of the light source, and glare from reflecting surfaces. Looking directly into a bright light or window creates a silhouetting effect, diminishing the ability to see detail. Children are also slow to adjust to changes in lighting, such as from outdoors to indoors or sunny light to shadows.

MYTHS

The following statements are NOT TRUE, according to current knowledge in the field:

* Persons with albinism always have red eyes.
* Persons with albinism are totally blind.
* Albinism is contagious.
* Persons with albinism are the result of evil spirits or wrongdoing.
* Persons with albinism are retarded or deaf.
* Albinism results from inbreeding or the mixture of two races.
* Persons with albinism have magical powers.

SOCIAL AND EMOTIONAL ISSUES

Persons with albinism often have quite normal lives. The support of family, teachers, and friends is crucial in order for a child with albinism to grow up with a positive self image. Sometimes, however, the appearance of the person with albinism becomes a focus, rather than the individual. A person with albinism may try to minimize the differences caused by albinism, resulting in a great deal of stress at continually trying to maximize visual ability and/or denying altogether that one even has albinism. Families of children with albinism may experience prejudice, rejection, or frustration. They may become caught in isolation and denial. As well, the myths related to albinism can interfere with the family's free discussion of the condition.

TEACHING STRATEGIES

* Since not all children with albinism have the same visual acuity or use their vision with the same efficiency, it is important to consider each child as an individual.
* Early and ongoing assessment of the child's vision is crucial. As children progress through the educational system, they face increased visual demands and smaller print size and thus can benefit from suitable magnifiers, telescopes, or large print materials.
* It is important that the child, parent, teacher, vision resource teacher, ophthalmologist, and optometrist work as a team. The team should consider positioning, seating, lighting, glare, toys and materials, along with social/emotional growth of each child.
* The condition of "slowness to see" calls for an approach that uses all the senses for learning (multisensory) with the very young child.
* Allow the child to use the head and eye position that is comfortable and works the best.
* Provide good indirect lighting or position a light source behind the child. Never position a child directly facing the light source. Also, parents or teachers should always position themselves so that the child is not looking toward a light source.
* A child who may be poorly organized may benefit from predictable environments and routines.
* A child should be able to hold toys and objects as close as he would like and should be allowed to move to the most advantageous viewing position.
* A careful "walk-through" of the house or classroom will identify the areas of highest glare. Using indoor lighting, even during the day, can equalize lighting from indoor and outdoor sources and reduce the effects of glare on the eyes. A hat or visor can eliminate glare from overhead lighting.
* To compensate for missed nonverbal cues such as facial expression, and everyday social gestures, etc., a child should be given verbal and/or tactual information.
* Lack of depth perception can be compensated for by learning to use information from the environment. Provide a child with repeated opportunities for exploration and movement in a variety of settings and lighting conditions.
* When the environment makes it difficult to see, a child must learn to rely on other senses. Bright glare from snow, sand, water, or pavement, or dappled light where sun and shadows continually change, can reduce a child's visual world.
* Open discussion and support at home for a child with albinism encourages him to acknowledge his feelings and to begin the process of self-advocacy.
* The following qualities make a significant difference in the child's ability to see printed materials:
o High contrast Uncluttered background
o Well defined pictures
o Large print Primary colors

GLOSSARY

1. Electron Microscopy: examination by a microscope which uses a beam of electrons to form an enlarged image of a specimen.
2. Platelets: one of three types of blood cells. The platelet is the smallest cellular element of the blood and is needed for proper clotting.
3. Refractive Error: an eye defect that causes decreased visual acuity.
4. Stereo Vision: the perception of objects in space and their relative position to one another.
5.HPS is also known as albinism with hemorrhagic diathesis and pigmented reticuloendothelial cells and as delta-storage pool disease.

RESOURCES

Haefemeyer, J. (1997). Visual Problems in Albinism, NOAH News, Winter.

Haefemeyer, J. (1996). X-Linked Ocular Albinism Researched, NOAH News, Winter.

Haefemeyer, J., Kind, R., LeRoy, B. (1992). Facts About Albinism

Johnson Printing Company (1996). Transactions of the American Ophthalmological Society Annual Meeting -1996.

King, R. A., Summers CG. (1988). Albinism, Dermatologic Clinics, 6,217-227.

Kinnear, P., Barrie, J., Witkop, C. (1985). Albinism, Survey of Ophthalmology, 30 (2),75-101.

Waugh, J. (1990). Social and Emotional Aspects of Albinism, NOAH News, Spring.

Moore, Dennis (1991). Another View: Albino vs. Person With Albinism, NOAH News, Spring.

National Organization for Albinism and Hypopigmentation (1992). Assisting Students with Albinism, NOAH pamphlet.

National Organization for Albinism and Hypopigmentation (1992). What is Albinism, NOAH pamphlet. NOAH, 1530 Locust St. #29, Philadelphia, PA 19102, 1-800-473-2310