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 21, 2014

#RarePov VERY OLD POST FROM 10-10-13

 I tried to thank each of you on Twitter, but I wanted to say THANK YOU again (in unlimited characters) for the successful #raredisease #RarePov Tweetchat last Thursday. 

We intended to go for 30 minutes but the conversation lasted for more than an hour, past 5pm ET.  We engaged 163 contributors and potentially reached more than 302,000 twitter accounts (according to Tweetreach: https://tweetreach.com/share/reports/7eaec68792993500a82131c81231a582b00c892e?v=2).  #RarePOV trendednationally during the chat – that is a lot of awareness!

We have a complete Storify that might be of interest:  http://storify.com/phrma/phrma-rarepov-tweet-chat/. I am hoping to have time to create a shorter one to capture a few noteworthy responses to each question as well as a few representative Tweets of the dialogue between participants.

Thank you again for your efforts to promote the Tweetchat in advance and for sharing your insights during the chat.  I’d like to host another #RarePOV Tweetchat the week of either January 27th or February 3rd to share resources and highlight opportunities to coordinate and leverage activities for International Rare Disease Day on February 28th. I hope you will join me then too, to continue the dialogue!

Sincerely,
Stephanie

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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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