How to Live With Albinism

Albinism is a genetic condition in which the pigment in the skin, hair and eyes is either reduced or absent. The main complications from albinism are compromised eyesight, sun sensitivity and emotional concerns. Taking steps to cope with this condition can help people lead full, active lives.

Instructions

Difficulty: Moderate

Things You’ll Need:

• Sunscreen
• Protective clothing
• Low vision aids
• Sunglasses

1. Use low vision aids. Albinism affects the nerves that connect the eyes to the brain. The eyesight lacks acuity. A condition where the eyes shake is common. People naturally cope by holding reading material close to the face and tilting the head. Glasses, contact lenses, magnifiers and handheld telescopes can help.
2. Time sun exposure. Albinism increases the risk of sunburn and skin cancer. The sun's rays are most dangerous at midday, high altitudes and in clear skies. Plan outdoor activities accordingly.
3. Select clothing carefully. When outdoors, wear a wide brim hat, long sleeved shirt and long pants--even in the summer. To cope with overheating, stick to lightweight cotton or fabrics that direct moisture away from the skin.
4. Wear sunglasses. Choose glasses that provide 100 percent ultraviolet protection. Ensure they are close fitting with large lenses and a wrap around style to seal out light. Polarized lenses reduce glare. Good quality sunglasses are not necessarily expensive and are available in various sizes for children and adults.
5. Apply sunscreen. For daily use select a product with a sun protection factor of at least 30. Apply to all exposed skin surfaces, even if sun exposure is not planned. For times when sun exposure is planned, use a higher sun protection factor, apply liberally and reapply every two hours.
6. Work with teachers to arrange any necessary accommodations. Proper seating will enable the student to see audiovisuals and minimize glare. Obtain reading material with large-sized print and high contrast colors.
7. Address emotional needs. Talk about the challenges of albinism. Role play responses to questions and remarks from peers. Join a support group for albinism.

Tips & Warnings

• Assess your shadow. If it is shorter than you are, it is midday. This is a time when sun rays are most dangerous.
• Contact the National Organization for Albinism and Hypo pigmentation to find support groups for albinism.