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.

Disclaimer


My Life Living With #Cryoglobulinemia, a #RareDisease



This is a personal blog containing information relating to my own life. The opinions expressed here are my own.  Guest bloggers  will be identified. 
Any medical information posted is either my experience/opinion or it will be noted if otherwise.  I am not providing legal, medical or professional advice and all opinions are my own. Always seek professional medical advice. 
My thoughts and opinions are expressed from my heart and many times they may not be grammatically correct since I am not a professional blogger.
I will not be liable  for an injuries, damages, or losses from the display of use of any information on my blog.
Please feel free to post any comments, but I do reserve the right to delete any comment for any reason whatsoever (such as profane, rude, abusive, misleading information and comments).  Please help me to keep it polite. 
I do reserve the right to change the focus of my blog, the title,  subtitle, to close it down or to make any changes I feel are necessary at any time.

I can be found on twitter as @mvennitti and @allianceforcryo and work with @vpprn

 On Linkedin I can be found as Marianne Vennitti

On Facebook I am the admin for: 

  • Alliance For Cryoglobulinemia
  • Cryoglobulinemia-Alliance For Cryoglobulinemia
  • Cryo Secret
  • Vasculitis Patient Powered Research Network
  • Moderator for RareConnect-Cryoglobulinemia




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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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