Diagnosis of albinism is based on:
- A physical exam that includes checking skin and hair pigmentation
- A thorough eye exam
- Comparison of your child's pigmentation to that of other family members
- Review of your child's medical history, including whether there has been bleeding that doesn't stop, excessive bruising or unexpected infections
A medical doctor specializing in vision and eye disorders (ophthalmologist) should conduct your child's eye exam. The exam includes an assessment of potential nystagmus, strabismus and photophobia. The doctor also uses a device to visually inspect the retina and determine if there are signs of abnormal development.
Genetic consultation can help determine the type of albinism and the inheritance.
Because albinism is a genetic disorder, it can't be cured. Treatment focuses on getting proper eye care and monitoring skin for signs of abnormalities. Your care team may involve your primary care doctor and doctors specializing in eye care (ophthalmologist), skin care (dermatologist) and genetics.
Treatment generally includes:
- Eye care. This includes receiving an annual eye exam by an ophthalmologist and most likely wearing prescription corrective lenses. Although surgery is rarely part of treatment for eye problems related to albinism, your ophthalmologist may recommend surgery on optical muscles to minimize nystagmus. Surgery to correct strabismus may make the condition less noticeable.
- Skin care and prevention of skin cancer. This includes receiving an annual skin assessment to screen for skin cancer or lesions that can lead to cancer. An aggressive form of skin cancer called melanoma can appear as pink skin lesions.
People with Hermansky-Pudlak or Chediak-Higashi syndromes usually require regular specialized care to address medical needs and prevent complications.
Lifestyle and home remedies
You can help your child learn self-care practices that should continue into adulthood:
- Use low vision aids, such as a hand-held magnifying glass, a monocular or a magnifier that attaches to glasses, and a tablet synced to a smart board (an interactive electronic board with a touch screen) in the classroom.
- Always use sunscreen with a sun protection factor (SPF) of 30 or greater that protects against both UVA and UVB light.
- Strictly avoid high-risk or prolonged sun exposure, such as being outside for long periods of time or in the middle of the day, at high altitudes, and on sunny days with thin cloud cover.
- Wear protective clothing, including clothes with color, such as long-sleeve, collared shirts, long pants and socks; broad-brimmed hats; and special UV-protection clothing.
- Protect eyes wearing dark, UV-blocking sunglasses or transition lenses (photochromic lenses) that darken in bright light.
Coping and support
Making school or work adjustments
If your child has albinism, begin early to work with teachers and school administrators to take measures to help your child adapt to classroom learning. If necessary, start with educating the school professionals about albinism and how it affects your child. Also ask about services that the school or workplace offers to assess and meet needs.
Adjustments to the classroom or work environment that may help include:
- A seat near the front of the classroom
- Large-print textbooks or a tablet computer
- A tablet computer that can be synced to an interactive whiteboard (SMART board) at the front of the room, allowing the child to sit farther back in the classroom
- Handouts of the content written on boards or overhead screens
- High-contrast printed documents, such as black type on white paper, rather than using colored print or paper
- Enlarging font size on a computer screen
- Avoiding bright light in the learning or work setting
- Allowing extra time for taking tests or reading material
Coping with emotional and social issues
Help your child develop skills to deal with other people's reactions to albinism. For example:
- Encourage your child to talk to you about experiences and feelings.
- Practice responses to teasing or embarrassing questions.
- Find a peer support group or online community through agencies such as the National Organization for Albinism and Hypopigmentation (NOAH).
- Talk to a mental health professional who can help you and your child develop healthy communication and coping skills, if needed.