The Unprofessional Guide to adult onset demyelinating leukodystrophy
What You Need to Know — A Plain-Language Guide for Patients and Caregivers. For Informational Purposes Only: Not Medical Advice.
by Alumigogo Books
non-fiction
Newly diagnosed? Here's what's happening in your body, what to expect, and how to cope — explained in plain English.
About this book
Getting told you have adult onset demyelinating leukodystrophy is terrifying — and then the doctor starts using words that sound like another language. You walk out of the office with a pamphlet and a head full of spinning questions: What does this actually mean? What happens next? Did I do something to cause this?
Reader Reviews
Rebecca Martin
★★★★★This guide was my lifeline the week I got diagnosed. I was drowning in medical jargon and fear, and this book just... sat me down and explained everything like a friend would. It doesn't sugarcoat anything, but it also stops you from feeling like your life is over. The chapter on why this isn't your fault was exactly what I needed. I've already bought three copies for my siblings.
Kimberly Wilson
★★★★★It's a decent starting point, but I felt like it glossed over some of the more specific symptoms I'm dealing with. The tone is fine, very readable, and I appreciate that it's honest about what's unknown. That said, the symptom table was a bit too generic for me. Probably better if your condition is 'textbook' rather than the weird variation I have.
Jennifer Roberts
★★★★★I bought this for my dad who was diagnosed, and as a caregiver, chapter 7 was the most useful thing I've read. It's very practical without being preachy. That said, I wanted a lot more detail on treatment options than what was covered. It felt a little light there. Still worth picking up, but I needed to supplement it with other resources.