Personal Trials, an Amazon Kindle SingleCOVER DESIGN BY KERRY ELLISThere are few diseases as devastating as amyotrophic lateral sclerosis (ALS). I have watched friends slowly die of this horrific disease. As The Scientist Senior Editor Jef Akst describes in her debut book, Personal Trials, ALS slowly attacks the nerves running out of the spinal cord, robbing patients of their abilities to walk, to communicate—eventually, to move altogether—all while leaving their minds intact. ALS patients are trapped inside their own bodies until eventually the disease attacks the muscles involved in eating and breathing. The disease is uniformly fatal. There is one US Food and Drug Administration-approved drug, which for some patients slows the progression of the disease for a few months.
Akst tells readers a story nearly as disturbing as ALS—do-it-yourself (DIY) clinical research.
Some patients, faced with nothing but a slow, miserable death, decide to throw “Hail Mary” passes. The patients Akst chronicles studied their own disease and the treatments for it in the research pipeline. When they couldn’t get their hands on an experimental drug they deemed hopeful, these patients searched online for other chemical entities that might do them some good. None did, at least in the long run. Still, their DIY efforts involved self-administering drugs, monitoring their responses, sharing data, keeping some of their doctors informed of the results, and clinging to hope for themselves and their families.
The reasonable conclusion to draw from a cursory reading of Personal Trials is that ...
