About this site

My name is Nathan Dodson. I was diagnosed with Bethlem myopathy — a rare congenital muscle disorder caused by mutations in the COL6 gene family — and this site is my attempt to do something useful with everything I've learned since.

I'm not a doctor, a researcher, or a clinician. I'm a person who has lived inside this condition for years and learned to read its rhythms: the slow mornings, the contractures, the paperwork, the rare moments of progress in the research literature. I write about all of it.

Why "Bethlem"?

Bethlem myopathy is named after the Bethlem Royal Hospital in London, where the first clinical descriptions were recorded in the 1970s. It sits on a spectrum with Ullrich congenital muscular dystrophy — its more severe counterpart. Both are caused by variants in COL6A1, COL6A2, or COL6A3, the genes responsible for producing type VI collagen, which forms the connective tissue scaffold around muscle fibers.

It affects roughly 1 in 200,000 people. That kind of rarity is its own particular experience — one I write about here.

What this site is

The blog is the core of it. I write posts the way I'd write letters — personally, plainly, with room for the hard parts alongside the hopeful ones. Some posts are about daily life. Some are about what I've read in the research. Some are just stories.

Everything here represents my own experience and understanding. Nothing on this site is medical advice. If you've just received a diagnosis and you're trying to understand what it means, please talk to a neuromuscular specialist — and then come back here when you want to hear from someone who's been living it.

Get in touch

If you have Bethlem myopathy, or you're caring for someone who does, I'd genuinely like to hear from you. Rarity means community is small and finding each other matters.