|
|
|
|
Why Is ALS Termed an Orphan Disease? ALS is an orphan disease because "only" approximately 30,000 Americans are living with ALS at any one time. It must be remembered, though, that there are many people who have lived with and died as a result of ALS. More than 5,000 new cases are diagnosed each year, and thus approximately that same number of people die as a result of ALS each year. And, because ALS is fatal, and the time between diagnosis and death is, on average, a matter of a few years, there are few persons with the disease who have the time or energy to commit to educating others about the disease. Back to What is ALS? Curtis and Heidi publicized the fact that he had ALS a few
months after his diagnosis, at the same time that they admitted to themselves that he had a fatal disease.
Heidi wrote articles in their local paper, which an
AP writer picked up on, and in turn, wrote an article that spread across the
nation. |
