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Share your photos, videos and your experiences! Be part of Rare Disease Day by informing others and raising awareness—sending a message of solidarity and community.

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Elizabeth - United Kingdom
WHEN I WAS DYING ….. I shouldn’t imagine there are many people who are still here to be able to tell a tale with the above title! Background: For many years I suffered with periods of dreadful ‘flu-like symptoms, unable to stop coughing, night sweats and exhaustion – and was consistently treated with antibiotics and antihistamines (I am an allergic person – to animals, dust, mites and sti...
Zane Beaty - United States
I was diagnosed with a severe case of Superior Mesenteric Artery Syndrome in Austin, TX on 11/26/2010. I spent three weeks in three hospitals and finally had a friend pick me up nearly dead and drive me to DFW right into Rouen-Y surgery that saved my life. I have never been the same after that day and losing 45 lbs and my stomach was so distended (swollen) the ER doctor told me it was close to bu...
Karen Cohen - United States
Diagnosed 12 yrs ago with Scleroderma & polymiositis overlap. Until very revently was able to work as Flight Attendant, despite sclerodactyly, digital ulcers, pulmonary hypertension & raynaud syndrome. Time has caught up to me. Was unable to complete requirements to maintain my F/A standing. Now facing loss of job & sliding into depression.
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