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.

Monday, February 13, 2012


This week I will be posting ways you can participate in Rare Disease Day right from your home.

Today's post for RARE DISEASE DAY FEBRUARY 29TH, 2012 is:

                         HANDS ACROSS AMERICAN 

Simply open the link, print out the flyer, take your picture with the flyer and post it to the link provided.

Next, post that same picture to Cryoglobulinemia Vasculitis Organization Face Book page.  

You support is needed to help save lives, and to insure that treatment is found.

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