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rachellou

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1 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

Before I found the auto inflammatory alliance my entire family was really really sick with the drs having no clue. I stumbled across the website one night and burst into tears. There, in black and white, for the first time ever was all of our symptoms AND a name -CAPS. I contacted Karen durrant who provided so much support. I was able to get the information I needed and take to my Dr who eventually diagnosed all 7(!) Of us with CAPS. In Australia there was no information so I heavily relied on the auto inflammatory alliance to guide my drs on how to get genetics, what blood tests needed to be ordered etc. 7 years later we have dramatically changed things for the better here inAuatralia. Anakinra (our medicine that was not available in our country) has now been put on the PBS, genetic testing can now be done in Australia, research is being granted government funding and getting a diagnosis for CAPS is much more streamlined. NONE of this would have happened without the autoinflammatory alliance and its volunteers. And I haven't even touched on the emotional support , only the practical. I so dearly wish I could give back in the form of funds, but like a lot of us with these debilitating diseases, I am unable to work and medical costs mean we cannot afford even a small donation. I would be so so grateful to see anykind of assistance going to this incredible alliance

Role:  Client Served