Challenges Of Albinism

Knowing the major problems facing people with albinism.

1. Vision problems, treatment and rehabilitation

People with albinism always have problems with vision that are not completely correctable with eyeglasses. Vision problems in albinism results from abnormal development of nerve connections between the eye and the brain due to their low or lack of colour or melanin.. The degree of vision impairment varies with the different types of albinism.  Generally, they have low vision. However, most can use the vision they have for many tasks including reading. Also, most persons with albinism do not use Braille. A small number of people with albinism have sufficient vision to drive a car.

TREATMENT AND REHABILITATION

People Living With Albinism (PWAs) often show a combination of any of the following named conditions. Treatment or Rehabilitation (where available) for the conditions are suggested.

Nystagmus: This is regular movement of the eyes, side to side or in circular motion.  Surgical intervention today minimizes but cannot completely cure it.

Muscle Imbalance: In eyes for strabismus, surgery may improve the appearance of the eyes. Strabismus includes “crossed eyes”” (Esotropia) and “lazy eyes” or an eye that deviates out (Exotropia). In the case of esotropia or "crossed eyes", surgery may help vision by expanding the visual field (the area that the eyes can see while looking at one point).

Photophobia: Sensitivity to bright light and glare,  PWAs need light to see just like anyone else. Sunglasses or tinted contact lenses help outdoor. Indoors, it is important to place light for reading over a shoulder rather than in front.

Near or far sightedness: Usually with astigmatism or some blurriness far- sightedness or near sightedness, various optical aids are helpful to people with albinism including bi-focals, strong prescription reading glasses and biotics (bioptics are glasses which have small telescope mounted on).

Foveal Hypoplasia: No normal development of their inside surface of the eye that receives light known as the retina see photophobia Optic nerve, miscounting nerve signals from the retina to the brain do not do follow the usual nerve routes. Some countries permit driving with biotic lenses for some PWAs.

2. Skin problems and how to prevent them

People with many types of albinism need to take precautions to avoid damage to their skin caused by the sun.

- Regular wearing sunscreen lotions can avoid damage of the skin. Also, wearing hats and sun protective clothing, which are clothing that covers skin from exposure to sun.

3. Medical Challenges and how to avoid them

 In many countries, most people with albinism live normal life spans and have the same types of general medical problems as the rest of the population. Those with additional conditions such as Herman sky-Pudlak Syndrome may have a shortened life span by lung disease or other specific challenges. In countries with sunny and hot tropical climates, persons with albinism who do not use skin protection may develop life-threatening skin cancers. Persons with albinism in such countries must use appropriate skin protection, such sunscreen lotions rated 30+ SPF or higher and proper clothing to enjoy outdoor activities and normal life span.

4. Social challenges and how to prevent them

 People with albinism are risk of isolation because the condition is often misunderstood. Social stigmatization can occur, especially within communities where other family members have dark skin and appearance. Families and schools must make an effort to include children with albinism in group activities.

Contact with other persons with albinism or others who have persons with albinism in their families can be most helpful.

5. Educational challenges and how to overcome them

Due to significant vision impairment most persons with albinism cannot read from the blackboard in a normal classroom set-up.

Therefore, teachers and educators must make extra effort to re-organise the classroom so that persons with albinism are positioned in front and move closer to the black board. This re-positioning must be done in such a way that the person with albinism is not staring into sunlight to see the blackboard. To enhance re-positing, the background must be kept "black"  all times, so that the contrast of the white chalk may enhance  read-ability.

If the re-positing fails, teacher and educators must be prepared to photocopy their notes and give copies to each person with albinism in their class. Exams, teacher's notes and other printed or photocopied handouts must be clear and with large enough print. If needed, extra time must be granted for exam writing for the persons with albinism. (Actual time plus half of actual time is suggested). This is especially important if the exam questions are provided in small or regular print and if the exams are re-used or faded copies. For day-to-day support, teachers and educators may find it useful to assign to capable student to each person with albinism for peer support in the learning process