CAPS community

Muckle-Wells-Syndrom, Familiäres autoinflammatorisches Kältesyndrom, NOMID / CINCA ist Teil einer Gruppe von seltenen Krankheiten, die Bestandteil der CAPS-Gruppe. Unten finden Sie Aussagen von Patienten, die mit diesen leben

Das Leben ist schon comisch Eine Sammlung von Comicstrips

Geschrieben von Rob Pleticha, published 17 Tage.

Das Leben ist schon comisch
Eine Sammlung von Comicstrips
Von Miss Waxie

Die traurige aber wahre und doch lustige Geschichte eines Mädchens, einer seltenen Krankheit namens Muckle-Wells-Syndrom, und wie die Welt der Medizin mit keinem von beiden fertig wurde. 

Die Geschichte einer jungen Frau, die mit CAPS lebt, kunstvoll und viel Humor erzählt. Klicken Sie auf das Bild unten, um in ihre Welt einzutauchen.
Mehr von ihren Arbeiten können Sie hier sehen:

www.acomiclifeindeed.wordpress.com

Geschrieben von Rob Pleticha, published 17 Tage.

Patient groups

  • NOMID Alliance

  • AMWS/CINCA

CAPS Recent Activity

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    INTRO
    topic, published 15 days ago

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    I thought I'd do a little intro, I turn 29 on the 16th of June and currently live in Western Australia. I first learned of Muckle-Wells when my brothers GP first brought it up. Though its really being my sister whose chased up info and got the ball rolling the most. This might have something t...

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    Democrat unites two families affected by rare syndrome - Dundalk Democrat
    news, published 24 days ago

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    Democrat unites two families affected by rare syndrome Hannah was diagnosed with Muckle Wells in November 2009 and Michele's nine-year-old daughter, Sophia, was diagnosed with the same syndrome last June. ...

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    Facts about CAPS
    document, published 26 days ago

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    Your guide to learning about CAPS from the Canadian CAPS Network.
    Find them at:
    http://raredisorders.ca/CAPS_overview.html

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    AMWS Patient Organization Brochure
    document, published 26 days ago

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    In French language.

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    Swedish Orphan Biovitrum's Kineret(R) has Received Orphan Drug Designation in the USA
    news, published about 1 month ago

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    Swedish Orphan Biovitrum (STO: SOBI) today announced that the US FDA Office of Orphan Products Development (OOPD) has granted orphan drug designation (ODD) to Kineret® for the treatment of cryopyrin-associated periodic syndromes (CAPS).
     

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    Critical appraisal of canakinumab in the treatment of CAPS patients
    document, published 3 months ago

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    Results of an independent scientific study analysing the effects of the biologic treatment canakinumab on patients.

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    Canakinumab (Ilaris):
    topic, published 3 months ago

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    Hello. i'm Ali i'm 32 years old i've had mws all my life and 2 days ago i had my 1st dose of Canakinumab (Ilaris): i live in telford in shropshire (uk) i would be intrested to know if anyone else esp in the uk is finding this treatment because my 3 year old daughter also has mws and i'm thinkin...

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    Critical appraisal of canakinumab in the treatment of adults and children with cryopyrin-associat...
    news, published 5 months ago

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    The efficacy of canakinumab in the treatment of CAPS provides proof of concept that IL-1β is an important factor in the pathogenesis of this disorder. Canakinumab given at 150 mg per dose induced a complete response after the administration of a single dose in almost all the patients as well as i...

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    Muckles-Wells Patient and Kineret
    topic, published 6 months ago

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    This past winter was my first winter on Kineret. Here in New England, the weather is tough for CAPS patients.
    In December I cought a severe cold after getting a swine flue shot. A swollan lymph node in my neck sent my primary doctor in a frenzy. Sent be trough neck, chest and then full body ...

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    Nine years old and a life of pain - Herald.ie
    news, published 6 months ago

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    Nine years old and a life of pain Herald.ieThe condition had gone undetected for seven years, until last Christmas when doctors diagnosed the rare genetic condition called Muckle-Wells Syndrome. ...