Starting a new Rhode Island chapter of the VF!

My mother was diagnosed with Churg-Strauss Syndrome (CSS) about two months ago now and is currently in rehab for the neuropathy that she's suffering from in both legs and her left hand.  I've seen CSS turn a healthy, active woman in her fifties into someone who suffered from problems plaguing just about every organ in her body.  She has gotten all three stages of CSS but is currently working her way into recovery.  As a family member, the most frustrating part of this ordeal was the inability to find doctors that have heard of CSS -- let alone know how to treat it (she went to three different hospitals before we could find someone to treat her once diagnosed).  I wonder if doctors in the area were familiar with the symptoms, would she have gotten to stage 3?  Would she have suffered like she did?  Would she have the use of her kidneys and not have to be on dialysis?

These questions have motivated me to contact the Vasculitis Foundation to see if I could somehow raise awareness (and funds for research) of this LIFE-ALTERING condition.  Awareness is key to identifying vasculitis and choosing a proper path of treatment before irreversible damage is done to critical organs.

That being said, I am working with the VF (Vasculitis Foundation) to form a Rhode Island chapter.  I'm looking for anyone in the RI area that would be interested in contributing ideas for awareness and/or fund-raising events.  I'm also gathering together a list of names of patients (along with their family members) that have a form of Vasculitis in this area so that we can exchange treatment and physician information.  It's always good to know what has worked for some as well as what hasn't worked for others.

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