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.

Cryoglobulinemia

Cryglobulinemia Support Groups and resources can be found at allianceforcryo.org



Contacts:

Eileen Propp -  epropp@allianceforcryo.org
Marianne Vennitti - mvennitti@allianceforcryo.org



This explanation of Cryoglobulinemia has been written by another rare disease patient living with Essential Mixed Cryoglobulinemia for 26 years, Eileen Propp
Do not use this information for medical advice.

Cryoglobulins are immunoglobulins (also called proteins or antibodies) that precipitate out of solution when cooled.  Cryoglobulins can restrict blood flow potentially causing damage to: skin, joints, muscles, nerves and/or organs.  Cryoglobulinemia that occurs with no known cause is called Essential Mixed Cryoglobulinemia (EMC) and is a rare disease according to NORD.  Cryoglobulinemia can also occur secondary to Hepatitis C, cancers and autoimmune diseases. 

 http://www.nlm.nih.gov/medlineplus/ency/article/000540.htm

1 comment:

Please contact me at mvennitti@allianceforcryo.org if you would like to know more about Cryoglobulinemia Vasculitis.

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