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.

Thursday, February 16, 2012

RARE DISEASE DAY - MAKE A DIFFERENCE FROM YOUR HOME


Write Your Reps

Information is provided for you to search for your representatives on this page. THIS ONE IS REALLY IMPORTANT!

As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the issues they will be able to make better decisions for the constituents they serve.
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Write Your Reps « Rare Disease Day USA
rarediseaseday.us
As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the iss...

MARIANNE VENNITTI
CRYOGLOBULINEMIA VASCULITIS ORGANIZATION
CVO - ASSISTANT DIRECTOR
MRSMVENNITTI@GMAIL.COM

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Please contact me at mvennitti@allianceforcryo.org if you would like to know more about Cryoglobulinemia Vasculitis.

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