Disability Medical Conditions: Batten Disease
Batten Disease is a genetic disorder that affects two to four out of every 100,000 births even thought the disease is not often diagnosed until childhood. When both parents are carrying the gene that causes the disease, a child has a one in four chance of having the condition. Sometimes several family members will have the condition. According to the Batten Disease Support and Research Association, the symptoms begin to show when a child is between five and eight years old. The disease is often first suspected in an eye exam because trouble seeing is one of the early signs. As the disease progresses, the child will become unable to communicate and possibly blind. Many children are confined to their bed. Some have seizures.
The Social Security Administration includes Batten Disease on its list of conditions on the Compassionate Allowances Program. Often when someone applies for Social Security income, they have to provide detailed information on their treatment and diagnosis. The diseases listed under the Compassionate Allowances Program lead administrators to expedite the application process because the diseases are usually terminal.
While there is extensive research ongoing, scientists have not found a cure for Batten Disease. Some drugs are helping patients cope with the seizures. Children with the condition do not live past their late teens or 20s in most cases according to the Batten Disease Support and Research Association. Often parents rely on Social Security income since one may have to quit work to take care of the child.