From the moment they are born, they look different. Albinos’ white hair, pale skin and light blue, or even red or purple irises are obviously unusual, and they often suffer from constant stares. Less obvious at first are their visual problems, that may require the wearing of glasses from as young as six months and the use of tiny telescopes, hand-held magnifiers, contact lenses with red centers and other visual devices. They are also likely to need eye surgery and must be extremely careful to avoid skin cancer.

In some traditional societies in Africa and South America albinos were persecuted and even killed for their body parts, which were sought out by witch doctors.

Yet the lives of the country’s estimated 1,000 albinos (from the Latin word albus, which means “white”) in Israel can be close to normal and very fulfilling, with their drive to succeed more than compensating for any disability.

The country’s first-ever conference on albinism was held recently at Hadassah University Medical Center on Mount Scopus in Jerusalem, bringing together some 300 people. They were family members (most of them healthy and symptomless carriers), physicians, researchers, optometrists, social workers and a handful of albinos of various ages. The youngest, a beautiful, twomonth- old baby girl with a head full of straight white hair, has an older brother who also has the condition. But although the carrier parents had never heard of the condition before his birth and were very nervous, today they are calmer and used to it.

The conference was organized by Hadassah’s Michaelson Institute for Rehabilitation of Vision, located on Hanevi’im Street within the borders of Bikur Cholim Hospital in the center of Jerusalem. The center memorializes the Scottish-born Prof. Isaac Michaelson, the renowned ophthalmologist who in 1954 became director of Hadassah’s eye department and taught his specialty at the affiliated Hebrew University Medical Faculty. Much of Michaelson’s work was to assist developing countries, particularly in Africa, and he also established the Jerusalem Institute for the Prevention of Blindness.

“This is our first conference on albinism, and maybe we should not have waited so long,” said Prof. Jacob Pe’er, head of the ophthalmology department in Ein Kerem whose specialty is very different – treating tumors in the eye. “We have the only center for albinism in Israel and one of the few in the world. We treat other ophthalmological problems, but we are unique in this here. I hope this first conference will lead to permanent meetings, at least one every two years, so that families can exchange information and the latest developments can be reported.”

An organization of parents of albino children – but not yet one of adults – has been established with the name Ofek Leyaldenu, to help them cope with the genetic disease. Michaelson Institute director and pediatric ophthalmologist Dr.

Claudia Yahalom said it was a father of an albino child who suggested holding the conference. The Michaelson center treats over half of the albino population, who come from all over Israel.

ALBINISM IS the lack of pigment in the eyes (ocular), the skin and hair or both (oculocutaneous). Although the average rate in the world is one per 20,000, here it is one per 5,000 who carry the gene. This phenomenon is apparently due to a higher rate of marriage between first cousins, she said.

Albinism, which can affect all vertebrates, results from inheritance of recessive gene alleles; they do not produce the pigment melanin, which is what causes the whiteness.

Many albino children suffer early in their lives from nystagmus, a condition of involuntary eye movement, often called “dancing eyes,” that occurs in about 90 percent of patients. The child may suffer from crossed eyes or hold his head at an abnormal angle so he can see better. Long thought to be incurable, these problems can now be cured by eye surgery – removing the muscles that are attached to the eyeball and reattaching them in the same or a different place.

In addition, Albinos are “blinded” temporarily by too much light and may also suffer from astigmatism (irregular curvature of cornea, which causes difficulties in seeing fine detail). Often, their retinas are damaged by light early in their lives or because of a poorly developed retinal pigment epithelium.

Their irises may be red because their lack of pigment makes it possible to see the network of blood vessels in the retina. Fortunately, however, they do not suffer from medical problems in other bodily systems, unlike people born with Down Syndrome, for example.

As an example of a baby brought for diagnosis, Yahalom said the infant looks “blonder than expected, possibly but not necessarily has a family history of the disease and an inability to focus. The diagnosis should be made as soon as possible so it can be treated and light damage minimized.”

The Hadassah center has a multidisciplinary team of ophthalmologists, surgeons, genetic counsellors, social workers, optometrists and others so that patients can be treated holistically.

Some experimental medications may also help. Research has been carried out on mice given L. dopa – a medication usually given to Parkinson’s patients – that promotes pigment formation.

“It can improve the condition of the retina and help them see better. It was even put in the drinking water of pregnant rodents to improve retinal development during pregnancy,” Yahalom said. “The first clinical study of L. dopa on albinos was begun in 2010 to see if it improves pigmentation and vision. Dr. Gail Summers of the University of Minnesota is working with us on patients aged three to 60 given different dosages of the drug as well as a control and placebo group. The research will end in December, and we look forward to seeing the results,” she said.

Michaelson optometrist Veronica Tzur noted that new contact lenses are available in the center’s contact lens clinic.

“There are soft lenses with a red center to prevent blinding by light; they don’t look red when worn. With regular glasses, due to nystagmus, it’s often hard [for albinos] to focus their eyes most of the time through the glasses’ optic centers,” she said.

Improving their vision even by half a line on an eye chart, she said, could make the difference between getting a driving license or not. The contact lenses, which have to be suited specially to the patient, improve their quality of life, because they feel uncomfortable wearing dark sunglasses indoors. Even a baby can wear contact lenses. There are, however, possible complications from contacts, so the lenses have to be cleaned thoroughly, and eye exams must be performed regularly.

Michaelson Institute genetic counsellor Dr. Dalia Eli noted that the institute does not make value judgments for parents who face the option of aborting a defective baby.

“We give the maximum advice, but we don’t decide for them. They see us before getting married or before getting pregnant or giving birth. We take a family history, ask about ethnic origin. We don’t recommend marrying first cousins. If both parents are carriers of the recessive gene, the risk in each pregnancy of having a healthy baby who is a carrier is 50%, of having a healthy non-carrier 25% and of having a baby albino is 25%. The mother can undergo amniocentesis and other tests to be sure and have a healthy non-carrier if she undergoes preimplantation genetic diagnosis and then in-vitro fertilization.”

THE ABUNDANCE of sun in Israel means that albinos have to protect themselves throughout the year. Everybody has the same number of melanocytes, but the amount of melanin they create is different, said Dr. Yuval Ramot, a Hadassah dermatologist.

“The amount produced depends on genetics and exposure to sunlight.

The greater the sun exposure, the more melanin created.”

But excessive exposure to the sun poses the risk of sunburn, aging of the skin, skin cancer, cataracts and the weakening of the immune system.

Albinos should regularly apply sunscreen with a sun protection factor (SPF) of at least 30. Some creams are broad-spectrum and help protect against UVA as well as UVB. The dermatologist recommends that his albino patients reapply cream every two hours. “I recommend buying the highest possible SPF at the cheapest price. Apply two or three teaspoons to the body and cream [an amount] the size of a five-shekel coin to the face – and do so at least half an hour before going out into the sun so it can be absorbed, he said.

Even one incident of sunburn can raise the risk of skin cancer in children. Eighty percent of sunlight exposure in one’s lifetime occurs before age 18, he continued.

Windows and even clouds don’t prevent exposure to the harmful rays. It’s best to wear long sleeves, dense but light fabric and wide-brimmed hats in the summer, Ramot tells his patients. “A baseball cap offers little protection.”

Raheli Dan, a veteran social worker and director of rehabilitation institute at Michaelson, noted that the country’s public facilities are built without taking into consideration the needs of albinos, other people with vision problems and cancer patients undergoing chemotherapy.

“There is too little shade in Israel. New buildings, buses, Ben-Gurion Airport’s terminal and Jerusalem’s Light Rail cars have large windows with no shades. Sunlight is blinding. Shade reduces the risk of skin cancer,” she said.

A FORUM of albinos and carrier parents brought the condition to center stage. Rim, an Arab mother of a five-year-old albino boy, recalls being worried when he was born with white hair. She and her husband were advised to take him to the Michaelson Institute, where the staff were warm and helpful.

“People look at him, and I can feel them asking themselves: ‘What is this? How did it happen?’” she says. “It took us time to cope with it. An albino woman who is a professor and whose son is a professor told us that my son could be as successful as they were. Her words helped.”

Sima, a Yeroham mother of four children, including nine-year-old Noa, had never heard of albinism or even seen one. Both she and her husband are Jews of Moroccan descent. Near the end of her pregnancy, she was involved in a serious road accident, and before her husband arrived at Soroka University Medical Center, she had already gone into labor.

“The midwife saw the baby’s head outside, and it had white hair. ‘Do you know about albinos – you know, Eli Luzon [the singer, who is albino]? Not terrible; they just have vision problems,’ she said. A white baby. I didn’t want her. I wanted them to take her back. But then, the family arrived and said she was so beautiful! Noa was the only albino in Yeroham. We are so happy with her.”

Diego, a 36-year-old albino born in Argentina who immigrated to Israel at age 12 and is now married with a healthy baby girl, said, “One can live very well as an albino.

I believe in it.”

Diego, who was helped by Michaelson for 20 years, served in the Israel Defense Forces, graduated from the Technion-Israel Institute of Technology in computer engineering and was hired by Microsoft Israel to develop computer programs. He even met Microsoft founder Bill Gates and was photographed with them. “I can’t drive, but I have a full life. I don’t see as well, but I have an excellent memory that helped in my studies.”

Osnat, a 39-year-old albino woman who works as an economist at the Central Bureau of Statistics, is currently working on her doctorate, is married and the mother of a nine-year-old boy. In school, she memorized what her teachers said because she often couldn’t see the board. Exempt from military service, she volunteered and served in education in the Israel Air Force. To feel “normal,” she dyed her hair and used mascara on her lashes. But her husband encouraged her to “go natural” and she did.

Yaniv, a 31-year-old accountant and married father of two, earned a master’s degree and works in the Finance Ministry in Jerusalem. “I excelled in my studies, but it was hard to find a job. As the years passed, I started to forget I was albino.” Yaniv, who volunteered in the army, represents musicians, plays the guitar and writes songs and poems. A constant theme is that he wants to live a normal life like everybody else – despite his disability.

Finally, 25-year-old Eldan is a twin whose sister is an albino, too. Both his parents were disabled by polio, “but they gave us a lot of encouragement.”

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