About me
I'm Christoph, 45 years old, and I've been living with Charcot-Marie-Tooth, type 2, for a few years now.
The diagnosis came a few years ago. At first, there was a kind of relief. Finally, a name for what had felt strange for so long. Then came what many people know: a lot of open questions, few concrete answers, and the feeling of being somehow alone with the condition.
That feeling was exactly why I started this blog.
What this blog is about
On leben-mit-cmt.de, I share what everyday life with CMT feels like for me. What has changed, what helps, what still works, and what doesn't anymore.
You'll find three types of content here:
- Personal experiences: How certain things actually feel for me. No generic advice, just what I've experienced myself.
- Clear, well-researched information: What is CMT, what symptoms come with it, what helps? Carefully researched and written so you don't need a medical degree to follow along.
- Assistive devices and everyday tips: Orthoses, shoes, small tricks. Things that have made my own life easier.
Who I am
Professionally, I work in IT. You'll probably notice it in the way this blog is put together. I like organizing things clearly and making them easy to understand.
What I’m not
A doctor, a therapist, or any kind of medical professional. Everything you read here is either a personal experience or information I've researched as carefully as I can. For medical decisions, the right address is always a qualified professional, not a blog.
Why this blog
CMT is a rare condition. "Rare" means, in practice, that when you get the diagnosis, you tend to run into gaps. Gaps with doctors who only know the condition from the margins. Gaps with family and friends who have never heard of it. And gaps in the information you find online, which is often either too shallow or too clinical.
With this blog, I want to fill a small part of that gap. For people with CMT who want to find themselves in someone else's story. For family members who want to understand what their partner, their son, their friend is going through. And for anyone else who's curious.
For me, feeling at home in my own situation starts with openness and clear information. That's what I'm trying to do here.
Get in touch
If you have questions, want to share your own story, or just feel like saying hello: drop me a line at hallo@leben-mit-cmt.de or reach out on Instagram. Comments under the articles will be coming at some point too.
Glad you're here.