Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
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.

Sunday, February 26, 2012

Rare Disease Day - February 29,2012

Handprints Across America
There are nearly 30 million Americans living with rare diseases. We want to see you and how Rare Disease Day is spreading across the United States. We invite you to print out this flyer with the Rare Disease Day logo and to take a picture of you holding it up anywhere in the US. We will post these pictures in a gallery on the Rare Disease Day US website. View what has already been submitted

Empowered patients are coming together around the world to help bring reform to our healthcare industry.  Please read.

If you or your loved one has been diagnosed with a Rare Disease then join in and fight for awareness, education and  research. Open your eyes and see the connectivity happening today on our social networks.

Join me today!

No comments:

Post a Comment

Please contact me at if you would like to know more about Cryoglobulinemia Vasculitis.