Frequently Asked Questions
Is Albinism common?
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 African countries 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
- At present, about 80-90% of Kenyan children with albinism attend schools for the visually impaired at primary level.
- 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 that AFEA has met 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.
Where can I get sun screen?
There are several brands of sun screen available at most retail outlets in Kenya.
The price ranges between Kshs 700 and Kshs 1500, depending on the sun protection factor. AFEA is making efforts to provide access to sun screen at minimal cost to people with albinism.making efforts to provide access to sun screen at minimal cost to people with albinism.
Where can I go for my prescription glasses?
Dr. Prabha V. Choskey, a Consultant Ophthalmologist and a trustee of AFEA offers ophthalmic services free of cost to people with albinism. You can see her by prior appointment at 101 Doctors Plaza Aga Khan university Hospital, Nairobi. Ph 3662724/3751453
The Albinism Foundation of East Africa is soliciting support from other ophthalmologists and optometrists to ensure that every person with albinism wears glasses with UV protection.