I remember how hard it was when I was little. I never had any energy, and spent so many evenings shivering on the sofa at home under a pile of blankets rather than spending time with friends. I was always just freezing! I’d also get these nasty rashes, usually on my arms and face. Nobody knew it was Muckle-Wells, we had never heard of it before. When I eventually got a diagnosis and met other people who’d been living with the same thing I felt so emotional. Now, with treatment, for the first time ever I know how it feels to feel normal it makes me realise how bad I felt before. I don’t know how I coped!

On the CAPS Family Network you will find all you need to know about CAPS (Cryopyrin-Associated Periodic Syndromes), from learning about what CAPS is, to who gets CAPS and what causes it, as well as useful facts about CAPS symptoms and treatments.

Start here to learn more about the disease and then, if you think you have CAPS, use the information from CAPS Family Network to help you talk to your doctor. It is important that you speak to your doctor to confirm if you are suffering from CAPS. Your doctor can provide current treatment to help relieve symptoms, and in some cases eliminate them.

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COMING SOON! CAPS Physician Resource Centre

CAPS Physician Resource Centre

This key resource for CAPS interested Healthcare Professionals will soon be available. Please leave us your email address to be informed of its launch.
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CAPS Family Network Resource Centre

Download the CAPS patient booklet and locate your nearest Specialist Centre.