My family has been affected by another devastating disease with a clear genetic marker, Huntington's Disease. If a parent has the genetic mutation that causes the disease, each of their children has a 50 percent chance of inheriting the mutation. Unfortunately, while there has been some work to stave off and lessen symptoms, there is no cure, which makes it a very difficult decision for someone to be tested for the mutation.
In both of these cases (genetic ALS and genetic HD) I think right now the best we can do is have realistic expectations about what physicians, nurses, aides, and others on a person's care team can do, and also to recognize that there are going to be a lot of questions that don't have great answers yet.
Ultimately, I expect that the greatest breakthroughs for these diseases will come through researchers who only indirectly work with patients, but I have the utmost respect for front-line health care workers who accompany these patients through a terrible situation.
In both of these cases (genetic ALS and genetic HD) I think right now the best we can do is have realistic expectations about what physicians, nurses, aides, and others on a person's care team can do, and also to recognize that there are going to be a lot of questions that don't have great answers yet.
Ultimately, I expect that the greatest breakthroughs for these diseases will come through researchers who only indirectly work with patients, but I have the utmost respect for front-line health care workers who accompany these patients through a terrible situation.