The Unprofessional Guide to Torrance type platyspondylic dysplasia

It's okay. I wish it had been longer on the actual genetics part, but I understand that's complicated. The first chapter made me cry because someone finally explained it in words I could understand. I just wanted more detail on what happens in the long run. Still, better than anything my doctor gave me.

I found out my daughter had this and I was lost. This book was like having a friend who's a doctor sit me down and explain everything without making me feel stupid. The part about not blaming yourself really hit home because I had been crying every night thinking I did something wrong. I've already given this to my sister and my mom.

Really helpful honestly. I'm a caregiver for my brother and the chapter on that was spot on. It felt like the author actually knows what it's like to sit in a hospital room for days. I liked the questions to ask the doctor section - I photocopied it and took it to our last appointment. It's not a miracle cure book, but it's real.

I appreciated that the book doesn't try to sugarcoat anything. It says this is serious but doesn't leave you in total despair. The symptom table was super clear and the day-to-day chapter helped me figure out how to adapt our home. Knocked off one star because I wished it had more on older patients, but overall very useful.

This guide saved me during the scariest week of my life. We got the diagnosis for our son and I couldn't stop shaking when I saw the big words on the paper. The chapter on what the disease actually is - written like a normal person talking to another normal person - was exactly what I needed. I read it twice. Absolutely recommend.

Decent resource, but I felt like the tone was a little too casual for my taste at points. I mean, this is serious. With that said, it does explain things clearly and the checklist questions were useful at our first specialist meeting. I'm glad I read it, but I didn't love the writing style.