Others are more obscure, such as Alpers disease, a progressive neurologic disorder that begins during childhood, type 2 Gaucher disease, an inherited disorder in which the body accumulates harmful quantities of certain fats, and Menkes disease, a genetic disorder that affects the development of hair, brain, bones, liver and arteries.
‘‘Some of the (conditions) aren’t killing you, some of them are just keeping you to the point where you can’t physically work,’’ said Peter Saltonstall, president and CEO of the National Organization for Rare Disorders. ‘‘But you’re still alive and breathing, and in that case you need to buy groceries, you need to be able to support yourself in some fashion. And so this is a program that helped solve that problem.’’
Robert Egge, vice president of public policy for the Alzheimer’s Association, said the program is a godsend for people who have just received diagnoses that promise to be extraordinarily difficult for patients and their families.
‘‘This is difficult for anybody to negotiate,’’ Egge said of the disability claims process. ‘‘But by the nature of the disease it can often be especially difficult for this community, as they are dealing with not only a terrible diagnosis but then the nature of the disease makes it very hard to go through this year-by-year process of getting the benefits they are entitled to under the law.’’
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