CAPS community

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CAPS Recent Activity

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    Jack from Ireland
    topic, published 13 days ago

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    Aisling wrote a nice piece here about Jack who has CINCA/NOMID and Downs Syndrome, hope the trips to Crumlin become less and new places for support become available

    http://www.cmrf.org/story/show/66

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    Arcalyst/Rilonacept
    topic, published 17 days ago

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    I was diagnosed with FCAS earlier this year and have been on Arcalyst for about three months. At first it seemed like a miracle, but now I am experiencing some breaking out. My current dose is 160 mg a week. My rhematologist seems reluctant to increase the dose, but, frankly I am his only pati...

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    FCAS
    topic, published 17 days ago

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    Hey in english :we have a boy of almost 2 years. He started with his illness when he was about 1 year. high fever, pain in joints and muscles. swelling of the joints. this was every time he was out in the nursery. he was ill at the time about 5 days a week. After many tests at the hospital they ...

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    Number six....his name is archie
    topic, published 20 days ago

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    In February nephew number 3 was born. He showed no sign of rash and yet the blood test for muckle-wells came back recently as positive, bringing our family number of cases up to six.

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    Canadian CAPS Meeting
    topic, published about 1 month ago

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    Save the Date, June 2, 2012, in Toronto:
    http://raredisorders.ca/documents/SAVETHEDATEnoticeJune2Conference.pdf

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    Do any of you that have CAPS in your family have some people that are more affected than others i...
    topic, published about 1 month ago

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    This abstract is about 2 siblings with atypical mutations for CAPS, and one sibling had more symptoms than the other, even with the same mutation.

    http://www.ncbi.nlm.nih.gov/pubmed/20506209

    Thanks to Karen for passing this along!

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    Announcing Autoinflammatory Disease Patient Picnic locations in the US
    topic, published about 1 month ago

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    We are in the process of contactingeveryone that did our survey about the autoinflammatory disease picnics, to announce the locations. If you have not heard from us yet, your email will be coming this week! The locations for picnics are:
    -Greater Chicago, IL area
    -Minneapolis, MN
    -2 locatio...

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    Canakinumab (Ilaris) muckle wells
    topic, published about 1 month ago

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    Hi there.
    My name is Alison and I would love to here from who is on Canakinumab (Ilaris) I'm on it, and next month will be my 5th dose. Also, if you have Muckle Wells, how has is your life improved?

    I really suffered with the rash, sore eyes and joint pains which had a major effect on my ...

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    Son recently Dx with Muckle Wells Syndrome
    topic, published about 1 month ago

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    Hi, My name is Amber, I have a 4yr old that has just been dx with muckle wells. I am so blessed to have found Dr. Lowe in Birmingham,AL. Until now I felt like it was a uphill battle to get answers for my son. He started out with ezcema as a infant and we noticed it happened when we went back to K...

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    NOMID Alliance Brochure
    document, published about 1 month ago

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    Dedicated to promoting awareness, care, and treatment for patients with Cryopyrin-Associated Periodic Syndromes (CAPS) and other autoinflammatory diseases.

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