I am Sherry Panetti
a family member of someone living with ALS
How does a healthy, athletic young man get ALS at the age of 33?
Why did it take 16 months to diagnose? How does a healthy, athletic young man get ALS at the age of 33? Why is there no treatment or cure after this disease has been known about since 1869?
There is no treatment. Recommended supplements are expensive and not covered by insurance. To be accepted into a trial, one has to know they have it within a short amount of time. Most diagnoses take so long, many patients are disqualified. They die after a few years of misery and complete dependence on those they love. Many are financially devastated as well as emotionally. There is no financial help to make accommodations to their homes. The cost of taking care of someone in complete dependency is huge.
You know what the recommendation from the medical team was when they finally had a diagnosis? “Go raise money. You’ll need it.”