bethlem.co
Living with
Bethlem myopathy.
A personal site about navigating a rare muscle condition — written as letters, not lectures. Stories, resources, and honest accounts from the inside.
Latest
Blog
A Name That Changed Everything
The day I finally had a word for what I'd been living with — and what that word opened up.
Read more →What is Bethlem myopathy?
A rare congenital muscle disorder affecting roughly 1 in 200,000 people, caused by mutations in the COL6 family of genes. This site exists to make the experience of living with it a little less lonely.
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