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February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European co...
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.
Thank you for supporting Rare Disease Day and sharing your story! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org
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