Alliance For Cryoglobulinemia
You Are RARE But NOT Alone
About Me
- CryoLady-Cares
- 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 DY FEBRUARY 29TH, WHAT YOU CAN DO FROM HOME
Today I would like to bring your attention to Letters to the Editor for Rare Disease Day Awareness. This is a sample letter you can print out and send to the editor of your local newspapers. Click the link and open the first link, letter to the editor.
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Please contact me at mvennitti@allianceforcryo.org if you would like to know more about Cryoglobulinemia Vasculitis.