Why inflamed.community exists
Who built this(open)
I’m S.R. The site is run by Big Wella, a small Australian research and edutech entity, but the day-to-day reading, writing, summarising, and approving is one person. Me.
I built this because people I love have ankylosing spondylitis. Watching them try to navigate a disease that takes years to diagnose, sits in a research blind spot, and is mostly explained either by jargon-dense papers they couldn’t access or by breezy wellness blogs that promised more than they could deliver, that’s the gap. I’m not a clinician. What I do know is how to research, read, and use the right tools to make sense of difficult things.
So that’s what this is. A place I would have wanted to send the people I love when they were first diagnosed. A research map written for someone who is not a researcher. A registry that respects the fact that giving up your data feels different when you’re on day three of a flare. A tip page where someone like you has shared what helped them sleep last night.
What AS actually is
AS, ankylosing spondylitis, is a chronic inflammatory arthritis. It causes pain, stiffness, and over decades, in some people, the slow fusion of the spine. It is also systemic. The same inflammatory machinery that hardens the spine causes gut disease in 60 per cent of patients, eye inflammation in roughly a quarter, and skin disease in a sizeable minority. It runs in families. It often appears in early adulthood. And it is invisible, to the people who don’t have it, and often to the doctors of the people who do, for years.
Despite affecting roughly one in two hundred people, AS sits in a strange research gap. The disease is too uncommon to attract the volume of attention that rheumatoid arthritis or IBD does. It is too common to qualify as rare in the senses that unlock orphan drug funding. The research is moving, 2024 and 2025 saw genuine progress on genetics, gut-immune mechanisms, and new drug classes, but the output is scattered across journals patients cannot read and clinical guidelines that take five years to update.
This site is a small attempt to close the visibility gap. It does three things at once: it maps the research literature for a non-specialist audience, it tracks new papers automatically each month, and it collects experience data from people living with the disease so the community can see itself.
How it works
The privacy posture, in plain terms.
The patient form does not ask for your name, email, or anything that identifies you. The web server discards your IP address rather than logging it. The dashboard suppresses any data point where fewer than five people contribute, so individual responses cannot be inferred. Every submission gets a one-time code that you can use to remove your row at any time within 48 hours. The code is the only thing that links to your row.
Why all of this. Health data is sensitive, and the people most likely to be helped by a registry like this are also the most likely to be let down by registries that take this lightly. The site is built so that re-identification of an individual is structurally impossible, not just unlikely. The full privacy approach is detailed at /privacy.
Who runs this
One person.
The platform is built and maintained by Big Wella, a small Australian research and edutech company, run by one person, with no clinical training behind it. AS affects people close to the maintainer, which is the only credential the project has and the only one it claims. There is no investor, no sponsor, no profit motive. The architecture is small enough for one person to run, and the project will stay that size deliberately.
The editorial calls, what gets onto the map, how a paper is summarised, when a community submission is approved, are made by that same one person. There is no peer-review board. There is also no paid advertiser. Both are intentional.
What’s next
Phase 1 (live)
The patient registry, dashboard with combinable filters, research map, community contribution form, community tips page with anonymous voting, and an opt-in notification list.
Phase 2
An automated literature tracker that scans PubMed and CrossRef for new AS papers each month. Blood marker fields on the form. A drug cycling tracker that visualises which medications people move through and why. A symptom timeline tool patients can take to their doctor.
Phase 3
Translations into Spanish and French. Partnerships with academic institutions interested in the dataset.
There is no fixed timeline. Build time is measured in evenings and weekends. If you want to know what’s been added recently, the homepage and the changelog are the source of truth.
Support
Why donations exist on this site.
The platform has running costs, a domain, hosting, a small monthly bill for the API that drafts the paper summaries. They are not large, but they are real, and they are paid out of pocket. If you find the platform useful and want to help cover those costs, the Buy Me a Coffee link below is how.
Donating does not give you any special access, influence, or data. Nothing is paywalled. There is no “supporter tier.” There are no ads. The platform is free for you whether you donate or not, whether you donate once or every month, and whether you donate two dollars or two hundred. The only thing it gives you is the warm feeling of having helped keep something going that you found useful, which is, in this context, the right amount of incentive.
Contact
Reach me at contact@inflamed.community.
A real person reads this address. Replies usually arrive within 48 hours. Removal requests, research suggestions, errors you’ve spotted, or questions about the dataset, all welcome. The project has no support queue and no autoresponder system. Just one inbox.