As a mom of a newly diagnosed teenager, I appreciated that this book didn't talk down to me, but it also didn't require a medical degree to understand. The chapter on what the heck the name actually means was worth the price alone. It's a bit light on the cutting-edge research, which is fine, but I wish it had a bit more on experimental treatments. Still, it's the first thing that made my husband and I feel like we could breathe again.

My wife was diagnosed last month and we were drowning in confusing information. This guide cut through all the noise. The section on what to expect at the first specialist visit was like having a cheat sheet. It's not a miracle cure book, which I appreciated, but it does feel reassuring and practical. The only reason it's not five stars is that I wanted even more detail on the day-to-day life stuff, but for a general overview, it's excellent.