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 - WHAT YOU CAN DO FROM HOME


MY suggestion for today for Rare Disease Day is an important one and easy to do.

Click the link below, fill in the information, and your done. By signing this form you will become an Ambassador for Rare Disease Day and you will be supporting NORD for all that they do for us to bring awareness to Rare Diseases. This will also bring exposure for Cryoglobulinemia Vasculitis because you will be asked what organization you are associated with. We have signed in as a Partner. They know us know. LET THEM HEAR YOUR VOICE!

It will only take a a couple minutes to fill in your name and organization. Please fill in Cryoglobulinemia Vasculitis Organization for yourself and all those who suffer with our disease. Thank You *Marianne*
Become a Partner or Ambassador « Rare Disease Day USA
rarediseaseday.us
Rare Disease Day is about realizing the similarities among all individuals impacted by rare diseases. By working together we can raise awareness and create a global impact. Whether you are an individual or part of an organization, we want you to show your support by becoming a Partner or Ambassador.

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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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