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June 13- International Albinism Awareness Day

Albinism is a group of genetic disorders resulting in little or no pigment (melanin) in the skin, hair and eyes. As a result, individuals with albinism are at an increased risk for skin cancer and vision problems. Through a review of statistics, it was found that 40% of all persons with albinism require refractive correction over +4.00D in magnitude, most commonly high myopia (with or without astigmatism). Other common vision issues include light sensitivity, rapidly oscillating eyes (nystagmus) and eye turns (strabismus).

According to traditional beliefs, individuals with albinism in sub-Saharan Africa are believed to be the result of infidelity with a white man, ghosts or a by-product of bleaching from a venereal disease. Commonly, they were either killed upon birth or ritualistically buried alive. Today, witch doctors continue to propagate the belief that people with albinism are spirits whose body parts could be used to obtain wealth and good fortune. Since 1990, there have been 300 reported attacks resulting in 190 deaths. These attacks have occurred most frequently in Tanzania, where albinism is widespread, occurring in one in 1,400 people. Sadly, only 21 convictions have been secured, due to lack of cooperation from victims’ families, as well as preconceived notions that people with albinism are blind and unable to identify their attackers. For their safety, many children with albinism have been removed from their families and placed in schools for blind and disabled children.

In honor of International Albinism Awareness Day, OCOS is proud to highlight the work of one of our members, Dr. Rebecca Kammer, who has dedicated a significant portion of her professional career to drawing attention to and empowering individuals with albinism in Tanzania.

Profile

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Dr. Rebecca Kammer owns a consulting firm and a part-time low vision practice. Her consulting projects primarily involve the development of outcome measures for clinical trials for vision impairing eye diseases. A secondary emphasis is related to her PhD in higher education and involves speaking at health professions universities and providing faculty and curricular coaching related to active learning and critical thinking. In 2016, Dr. Kammer started her low vision practice in Irvine after previously serving as Chief of Low Vision Rehabilitation at the Southern California College of Optometry. Throughout her professional career, Dr. Kammer has been involved in medical mission trips, mobilizing optometrists, optometry students, opticians, members of her church and other health professionals to projects in Honduras, Mexico, Kenya and Tanzania. As stated previously, she is a strong advocate for human rights and healthcare for people with albinism in Tanzania.

 In 2009, Dr. Kammer was watching a documentary on geneticist Dr. Murray Brilliant and learned about the killing and maiming of people with albinism for their body parts in East Africa. As a health professional familiar with providing care in remote settings and well versed on the vision issues of individuals with albinism, she felt compelled to contact Dr. Brilliant immediately. Dr. Kammer was directed to Under the Same Sun, a nongovernmental organization (NGO) dedicated to promoting the rights of individuals with albinism, and was shortly thereafter leading teams to provide glasses, telescopes and magnifiers for sponsored individuals with albinism throughout Tanzania.

 In the years that followed, Dr. Kammer continued to develop relationships, including to the Tanzanian Optometric Society, United Nations and the United Kingdom-based NGO Standing Voice. In 2014, she started a Tanzanian low vision program with Standing Voice, educating and empowering optometry and ophthalmology to provide low vision clinics and care to over 1,000 individuals with albinism annually. The program also provides education and advocacy to teachers and political leaders about albinism, while developing a model that is aimed at supporting other African countries with high prevalence of albinism. Dr. Kammer writes and speaks for international conferences in efforts to provide ongoing global awareness and has a book chapter on albinism in Africa through Elsevier on track for publication in late 2017.

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 Read more about Dr. Kammer’s journey helping patients with albinism in Tanzania.

Q&A:

Q. Can you provide us with the story of a particularly memorable patient?

One particular young girl about 16 came into one of our early clinics. She was guided in by friends and obviously had severe vision impairment–much more than is obvious in type II albinism commonly seen in Tanzania. She sat down in our exam area and the students I was overseeing were not able to help her; she kept her eyes closed and would not interact with us. This was her first time in school, equivalent to about 1st grade level. After working with her for a bit I got a glimpse of her radical retinoscopy reflex and could tell she was over -20.00 D. I sat there, stunned for a minute, doubting what I had seen. I decided to put -16.00 D in trial lenses and sit her on the side of the room for a while and see what happened. Sure enough, 20 minutes later, I noticed her looking around with her head up. Then she picked up her bare foot and started to hold it up about a foot away from her eyes and examined it. I sat there thinking, “I bet she’s never really seen her feet.” I became very emotional and reflected on how much need existed and how no one had ever examined or appropriately prescribed for 90% of the people with albinism in Tanzania. In addition to the lack of clinical expertise to do an exam on someone with nystagmus, photophobia, low vision, high refractive error and strabismus, there was so much societal discrimination and persecution.

 I had the pleasure of seeing this young lady (with a final prescription of -26.00 D OU) for several follow-up visits and revising the power of the prescription over the years. In the beginning, our team replaced the glasses twice due to breakage and noticed she didn’t wear them full-time in spite of re-education and reduction of prescription strength. Finally when she was 20 and had advanced several grades in school, but still struggled with integration and inclusion at her older age, I noticed she was wearing her glasses constantly. I asked her what had changed. She said she had been embarrassed of her small eyes and no one in her village had glasses, but a year prior she had returned to her village and her uncle had told her firmly that she must wear them and that she looked beautiful with them on. She never took them off after that and said that she was excelling in school and life was improving for her and that she had finally decided to adjust to the “strong” glasses.

 The societal and cultural norms have been the most challenging aspect of providing vision care and have created an enormous learning curve. Partnering with existing Tanzanian eye care providers and organizations is crucial to improving access and uptake of health care.

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 Q. What is the best way for a member of OCOS to support your work in Tanzania?

In the beginning, and still occasionally, I take suitcases of materials (pre-made glasses, sunglasses, low vision monoculars and magnifiers, etc.), but now the program has taken on much greater reach and the materials are shipped direct to Tanzania. We have found ways to reduce the cost of monocular telescopes to $12 each and glasses as low as $20 thanks to partnerships with Essilor Foundation. As the program grows, the Tanzanian government is starting to help by paying the doctors in our program but the devices and glasses will unlikely ever be covered due to the severe poverty and limited budget.

One goal I have for the future is to offer an all-Africa conference for optometry and ophthalmology to attend and learn the unique issues and skills needed to effectively manage patients with albinism. There is such a lack of critical clinical skills, prescribing strategies and transferrable knowledge for patient education (even in the US) that educating and training others is an urgent calling. This conference would be costly and your support is needed.

Support in the way of monetary donations is the most pressing need at this time. Standing Voice, the primary program provider, is a UK based organization without a US tax identification number for tax deduction purposes. Under The Same Sun, a Canadian organization with a US arm and tax identification number can be the easier donation route and they will support the goals that I outlined above. Just write in the memo or notes section “Dr. Kammer, conference” or “Dr. Kammer, glasses” under donations on the UTSS web page. Your contributions can make a substantial difference!

Learn more about the human rights and health issues surrounding albinism in Tanzania.

Learn how you can help.

Under the Same Sun http://www.underthesamesun.com/, https://www.facebook.com/underthesamesun/

Standing Voice http://www.standingvoice.org/about, https://www.facebook.com/standingvoice/

Other sources

http://www.mayoclinic.org/diseases-conditions/albinism/basics/definition/con-20029935

Steven Wang, OD
OCOS Public Relations

 

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