July 9, 2021 - Do You Know about the National Organization for Albinism and Hypopigmentation?
The National Organization for Albinism and Hypopigmentation (NOAH) is dedicated to providing information and support to the albinism community. This organization provides resources and supports research about albinism. They have dynamic training using both virtual and face-to-face events targeting individuals with albinism and their families.
There are many types of albinism and hypopigmentation. Did you know that a variety of eye problems in albinism result from the abnormal development of the eye because of a lack of pigment? These often include:
- Nystagmus: Regular horizontal back and forth movement of the eyes
- Strabismus: Muscle imbalance of the eyes, “crossed eyes” (esotropia), “lazy eye” or an eye that deviates out (exotropia)
- Photophobia: Sensitivity to bright light and glare
- Refractive Error: People with albinism may be either farsighted or nearsighted and usually have astigmatism
- Foveal hypoplasia: The retina, the surface inside the eye that receives light, does not develop normally before birth and in infancy
- Optic nerve misrouting: The nerve signals from the retina to the brain do not follow the usual nerve routes
In some forms of ocular albinism, hearing may be affected and the person may develop hearing problems or deafness over time. This makes regular assessment of hearing a must for these children.
NOAH has many resources available in English and Spanish on their website. They also have publications for individuals with albinism, Albinism InSight, and Ed U for professionals working with individuals with albinism.
If you know someone with albinism or teach someone with albinism, you want to become familiar with is organization and all it provides.