The Unprofessional Guide to craniofacial-deafness-hand syndrome

I got this diagnosis three weeks ago and spent the first two of them crying in my car after work. This guide is the first thing that made me feel like I could breathe again. The chapter on what is actually happening in my body was so clear and so kind — no judgment, no jargon, just facts and a little humor. I've read it twice already and I'm bringing it to my next doctor's appointment.

My daughter's doctor mentioned this syndrome name and I just went blank. This book got me through the panic. I especially appreciated the caregiver chapter — it was the first time I felt like someone was talking to ME, not just about my kid. The section on what not to say to a patient made me laugh and then feel guilty because I'd said half of those things. Thank you for this.

It's fine. Well-written, easy to understand, and definitely better than the clinic's pamphlet. But I felt like it glossed over some of the trickier realities, especially around the surgery options. The trade-offs felt too neat. Still, worth a read if you're newly diagnosed and want a starting point that won't overwhelm you.

Solid introduction but I wanted more depth. The chapter about causes basically said 'we don't know' a few times, which is honest but frustrating when you've been waiting months for answers. That said, the questions to ask your doctor section at the end is genuinely useful — I brought it to my last visit and the doctor seemed impressed. Good for families, less good for someone who's already read a lot about their condition.

I am a mother of a 4-year-old with this syndrome and I can't tell you how much this helped me. The day-to-day chapter alone is worth the price — finally someone explains what school might look like, how to talk to teachers, and which battles actually matter. The tone is like a friend who's done this before but also knows the medical side. I've bought a second copy for my sister.

Good book, but I wish it had been longer. It covers all the basics well — I really connected with the chapter about managing daily life and the mental health realities. But I needed more on adult patients versus children. This felt geared toward parents of young kids, which makes sense given the condition, but I'm an adult with this diagnosis and felt a little left out.

My wife found this right after our son's diagnosis and it became the family textbook for a while. Very helpful, very clear. I'm giving it three stars because I would have liked more specificity on hearing interventions — the book mentions options but doesn't go deep enough into how families navigate the choices. Still, it's a good first step and it gave us a common vocabulary to talk about things.

Really practical, which is exactly what you need when you're in shock. I loved the checklist in the diagnosis chapter — I used it at my first specialist appointment and felt so much less lost. The caregiver chapter made me tear up because it was the first thing that acknowledged how hard this is for the people around the patient too. Not perfect, but a genuine resource. I'll be re-reading sections as we go.