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, January 28, 2013

Share your Rare Disease story with Pharmaphorum

Rare Disease Patients

Pharmaphorum is featuring Rare Diseases for the month of February. They will be creating a Public Service Announcement from videos of patients. If you are interested in sharing a piece of your story please following these instructions:

Record yourself on a webcam by answering these three questions.

1. What did it feel like when you were first diagnosed with a rare disease?
2. What has been the biggest obstacle to your life with this rare disease?
3. What can you share with other sufferers of rare diseases / what have you learned that will help them?

When completed send the video file to Rebecca Aris by February 8th.

She will download and edit it for you.

Thank you,

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