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Just diagnosed, or trying to make sense of it?

This page is the short version. Six things worth knowing, in the order people usually ask them, each with a link to the research behind it. Read it in ten minutes, then come back to whichever part matters to you.

  1. 01

    What you actually have

    Ankylosing spondylitis is your immune system inflaming the joints where your spine meets your pelvis. It is not wear and tear, it is not your fault, and it is not rare: about one person in two hundred. Over years, inflammation can be followed by new bone that stiffens the spine, which is what treatment aims to prevent.

    What is ankylosing spondylitis, in plain terms? →

  2. 02

    Why it took so long

    If your diagnosis took years, that is the norm, not a failure on your part. Back pain is common, the early signs look mechanical, and the scans can be read either way. There is active research on fixing this, and being diagnosed early turns out to matter for your spine decades later.

    Why did it take so long to get diagnosed? →

  3. 03

    How treatment usually goes

    Most people start with anti-inflammatory tablets and exercise. If the disease stays active, the next step is an injected biologic or an oral JAK inhibitor. All of them control symptoms well for most people. Which one, and in what order, is a conversation with your rheumatologist; here you can read what the guidelines say and why.

    Which treatment comes first, and what comes after? →

  4. 04

    Exercise is treatment, not advice

    Fifty-nine trials agree that structured exercise improves pain, function and disease activity. Pilates, yoga and Qigong each score well on different measures and none is clearly best, so the one you will keep doing is the right one. Short, regular sessions beat heroic ones.

    Does exercise really help, and which kind? →

  5. 05

    Things to keep an eye on

    AS reaches beyond the spine. A painful red eye needs same-day care. Gut symptoms may be part of the same disease. Circulation, bone strength and falls deserve the routine checks that often get skipped. None of this is a reason for alarm; all of it is a reason to know.

    My eyes keep flaring. Is that connected? →

  6. 06

    What this site can do for you

    Every paper on the research map has a two-sentence summary written for someone without a medical degree, and a note on why it matters. The questions page groups them by the things people actually ask. The anonymous registry lets you add your own experience to a public picture of how AS behaves, with nothing that identifies you.

    What if a drug stops working, or never worked? →

Trusted guides, written for patients

Not research papers: plain guides from patient organisations and health services, free, and checked when added. The flares and fatigue guides are the two most people wish they had read first.

More organisations, by country, in the resource directory.

Where to next

Living with AS for years

All the questions, grouped by diagnosis, treatment, daily life and the rest of the body.

Browse the questions →

Researcher or clinician

The full map: nine threads, every paper, organised by mechanism.

Open the map →

Add your experience

The anonymous registry. No name, no email, a removal code you keep.

Fill in the form →