The Unprofessional Guide to renal coloboma syndrome

I'll be honest, I bought this hoping for something that would finally explain my daughter's diagnosis in words I could understand. It does that, mostly. The kidney and eye stuff is explained really clearly. I just wished it had more detail on the actual treatment options and less time on the emotional stuff. Still, it's the best thing I've found that isn't written for medical students, so it gets three stars from me.

As someone who got this diagnosis two months ago, I was completely lost. This guide felt like a friend sitting me down and explaining everything without making me feel stupid. I especially appreciated the chapter on genetics — I'd been carrying around guilt that I somehow caused this, and reading the plain-English explanation helped me finally let that go. The symptom table is something I've already taken to my doctor to go over.

I'm a caregiver for my husband who has renal coloboma syndrome, and this guide has been a lifeline. The chapter on caregiving alone is worth the price — the checklist for staying on top of his care without losing myself is something I've literally taped to our fridge. The plain-language explanations meant I could finally understand what his doctors were telling us. I've read it twice and I'll read it again.

It's fine. It's helpful if you literally just got the diagnosis and need the basics. I was hoping for more specifics about what daily life actually looks like — like, what do you eat? How do you plan travel with a kidney condition? The chapter on day-to-day life felt a bit general to me. But it's well-written and not scary, which is more than I can say for most medical information.

Found out my son has this at his annual eye exam. I didn't even know the word 'coloboma' before last month. This book helped me understand that there are TWO things going on — his eyes and his kidneys — and that they're connected. That was the lightbulb moment for me. I wish my doctor had explained the eye-kidney connection like this. Good resource, though I'd have liked more on the long-term outlook.

As a patient who was diagnosed in my 30s, I've never found a resource that actually talks to ME instead of about me. This guide does that. It's honest without being doom-and-gloom, which I really appreciated. The chapter on questions to ask your doctor is gold — I literally brought it to my last appointment. I just wish there had been more case examples of real people's experiences. That would have pushed it to four stars.

This is the book I wish I'd had when my daughter was diagnosed at age two. I spent years struggling through medical journals and confusing websites. This guide explains everything — the kidneys, the eyes, the genetics — in plain English that I can finally understand and even explain to her grandparents. The tone is warm but not sappy, and it never talks down to you. I've already recommended it to our support group.