About this site.
Where it came from, who built it, what principles it operates on and why there are no ads here — you can read about all of that below.
First, the diagnosis.
Then, the information gap.
Next, this site.
The M35.4 diagnosis came in the middle of a working career — without warning, but with a bang. First reaction: shock, stress, a search for information. Results: zero articles written in a way a patient can understand. A few mentions on low-quality medical blogs and a Wikipedia entry.
I threw out that amateur nonsense. The only sources of knowledge were articles for rheumatologists and professional medical publications. Good — but not for someone who has just learned that their immune system is attacking their own body.
I decided to change that. If this site shortens the road to diagnosis for even one person — or means a GP learns what to look for — then every hour spent building this site was worth it.
What we stand for.
Independence
The site has no sponsors, advertisers or links with pharmaceutical companies. Every article is written by a patient or doctor of their own will. No content is paid for.
Transparency
Every medical claim has a source. Content without a verified source is marked as »mockup« or »patient observation«. The author of every article is named.
Openness
All content under CC BY-SA 4.0. You may copy, translate, cite — with attribution. The site's source code is public.
How it came to be.
Diagnosis
Junior dev, first job in IT. M35.4 diagnosis lands mid-project. I start searching in Polish — there's almost nothing.
First notes
I start writing down everything I find — PubMed articles, visit reports, observations about my own body. The notes grow to an unwieldy size.
Decision to build a site
I decide these notes should be public. If the next person with M35.4 finds this site on Google before reaching their fifth doctor — that's reason enough.
Public beta
Site launched in 6 languages, with 18 content pages. The rest is on the way.
How it works.
How you can help.
Verify the translations
DE, FR, ES and IT translations need a native speaker to confirm they are correct — write to us.
Share your story
Every M35.4 patient has a unique road to diagnosis. Yours might be the one that helps someone else.
Review medical content
If you're a doctor or researcher and spot an error — write to us. We fix it fast and gratefully.
Support organisations
This site does not collect financial support. Instead, we maintain an independent list of organisations that genuinely need funding for rare diseases.
Something doesn't match the facts? Have a question about how the site works? Want to suggest a section?