Community Callouts
You found us — and you're not alone anymore
A welcome from Thomas Cheesman, founder of Bare Your Rare and lifelong HCS patient
I was born in 1980 with a condition that didn't have a name for most of my childhood. Growing up in rural northern Alberta — places like Rycroft and Spirit River — there was no one who looked like me, moved like me, or understood what was happening inside my body. No community. No forum. No midnight Google search that returned anything useful.
Hajdu-Cheney Syndrome affects fewer than 100 documented people worldwide. That means your GP has almost certainly never encountered it. The specialist you were referred to may have read about it once in a journal. You have probably spent years being the most informed person in the room about your own condition — and also the most exhausted person in the room because of it.
I built this platform because I didn't want anyone else to spend decades searching for people who get it. Whether you were diagnosed last month or have been living with HCS your whole life, whether you're a patient, a parent, a caregiver, or a researcher — you belong here. Ask anything. Share anything. There are no stupid questions in a condition this rare.
The diagnosis that changes everything — and the community that was missing
A welcome from Thomas Cheesman, founder of Bare Your Rare and rare disease patient
If you're here, you probably already know how hard it is to explain Stiff Person Syndrome to someone who hasn't heard of it. You may have spent years being told it was something else entirely before someone finally looked at the full picture.
- Anxiety disorder
- Fibromyalgia
- Psychosomatic illness
- Multiple sclerosis
- Parkinson's disease
- Functional neurological disorder
SPS got a moment of public visibility when a famous artist went public with her diagnosis. What it didn't get was a space where patients could actually find each other, talk openly, compare notes, and support one another through the grinding daily reality of living with a condition that most of the world still can't pronounce.
I don't have SPS — my condition is Hajdu-Cheney Syndrome, another ultra-rare disorder affecting fewer than 100 people worldwide. But I know exactly what it feels like to sit across from a doctor who has never seen your diagnosis in a real patient before. I built Bare Your Rare because that loneliness is optional. Community shouldn't require a critical mass of patients to exist.
Whether you were recently diagnosed, still chasing answers, managing relapses, or just looking for someone who understands what a bad day actually looks like — this space is yours.
For the ones who became their own experts
A welcome from Thomas Cheesman, founder of Bare Your Rare and rare disease patient
There's a particular kind of patient that Erdheim-Chester Disease tends to create. Because ECD is so rare — around 1,500 documented cases worldwide — most people who receive this diagnosis quickly realize that they are going to have to become deeply, almost professionally, informed about their own condition.
Your GP likely hasn't seen it. Your local oncologist may be consulting literature they've never had reason to read before. The path to diagnosis was probably long, strange, and full of wrong answers. And somewhere along that path, you became an expert — not because you wanted to, but because you had no choice.
ECD sits at a strange intersection — classified as a histiocytic disorder, capable of affecting almost any organ system, with treatment protocols still being shaped in real time by the patients and researchers living and working with it. The community that exists around ECD is small but remarkably informed and remarkably generous with that information.
I want this to be a space that reflects that generosity. I'm Thomas. My condition is Hajdu-Cheney Syndrome — another condition so rare that most doctors encounter it only in textbooks. You deserve a space that's yours, not scattered across corners of the internet.
Rare and complex deserves real community
A welcome from Thomas Cheesman, founder of Bare Your Rare and rare disease patient
POEMS Syndrome has one of the most unusual names in medicine — built from its defining features. It is also one of the most frequently misdiagnosed conditions in the rare disease space, with many patients spending years being treated for something else before someone finally looks at the full picture.
POEMS responds to treatment, and getting to the right treatment sooner makes a genuine difference. Which is part of why community matters so much here. This space exists to hold that knowledge and make it findable for the person who needs it tonight.
I'm Thomas. My condition is Hajdu-Cheney Syndrome — ultra-rare, often misunderstood, and the reason I built this platform. You found this place. That means you're not alone anymore.