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.

Tuesday, October 23, 2012

SANFORD CoRDS - Chat With Us Oct. 26th Noon CST



Liz and Natalie from CoRDS met with me a week or so ago to discuss what I would like to share about myself and the Alliance for Cryoglobulinemia on their next Tweet Chat as their guest.  After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers but we need your voice as well.   Collectively we are larger than the patients of AIDS and HIV put together.  That's allot of people living in isolation without answers on this sometimes lonely road to a treatment, a friendship, a community.  

CoRDS is hosting our Tweet chat October 26th, Noon CST, to talk about our obstacles and challenges, our progress, and our accomplishments that we face everyday on our journey. 

Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.

If you've never joined before, just go to http://tweetchat.com/ and add the hashtag #CoRDSChat.  It's easy to follow along and Natalie will give you directions on how to RT, pause and add comments. It's just like twitter so share, share, share. Be sure to follow @SanfordCords on twitter.

Please feel free to email me at mrsmvennitti@gmail.com if you need any help with the Tweet Chat set up.  Arrive 5 minutes early on http://tweetchat.com/ to sign in.


    See you there.  Marianne-Laughingnana Cares - I Care Because I'm Rare 

    1 comment:

    1. CryoLady-CaresOctober 24, 2012 at 6:49 PM

      If you would like to follow my blog, please go to the right hand side and a SIDE BAR will come out. The second one down is the follow tab. Laughingnana

      ReplyDelete

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

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