Children with cystinosis can do well in school. Intelligence and school performance is usually average. Some children may have specific learning disabilities such as problems with visual processing. Some children may need special accommodations such as the need to wear sunglasses in class, have water or snacks in class, or take medications while at school. Children with cystinosis are eligible for an individual education plan (IEP) or a 504 plan. An IEP is a document that helps to guide the education of a child with a disability or special needs. The plan is individualized for each student. A 504 plan ensures that students with disabilities can fully participate in school and have access to the same educational opportunities as all children. Parents are encouraged to provide a school with a packet of information on cystinosis and to work with school officials including teachers, nurses, psychologists, the principal, and other professionals.
The U.S. Department of Education has information on individual education plans and on 504 plans.
Cystinosis support groups have information and advice on how to handle schooling for children with cystinosis. The Cystinosis Research Network offers a booklet called the Cystinosis Patient Handbook, which includes information about schooling.
