Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

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My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Tuesday, October 21, 2014

Tweet Chat -CoRDS Registry

Liz and Natalie from CoRDS met with me a week or so ago and we discussed what I would like to share about myself and the Alliance for Cryoglobulinemia on their next tweet chat.  After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers.  Collectively we are larger that the patients of AIDS and HIV put together.  That's allot of people living in isolation without answers on this lonely road to a treatment.  There is no cure! Some may find treatment and together we can make it happen.

We are meeting on tweetchat October 26th, Noon CST, to talk about the obsticales and challenges, our progress, and our accomplishments we face on our journey. 

Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.

This online Twitter chat hosted by Wego Health will take place this Friday worldwide at 2pm-3pm Eastern Time in this online chat room using the hashtag #HaRoundtable ~> Chat Here!

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