#RareDisease … Searching for Rare Disease Support on the Social Web

When it comes to The Healthcare Hashtag Project, one of the most rewarding things for us at Symplur is to see people use and share the tools and information that they find during their visit.  To know that the project is found to be useful by a diverse community of healthcare workers, caregivers, and patients makes us feel like we’re helping to fill a void.  And perhaps nowhere is that void more evident than for those whose lives are touched by a rare disease. I say that about rare disease with some rather firm confidence … because I speak from personal experience.  Please allow me to explain …   Contracting a rare disease can be unexpected About four years ago, just a couple of days after Christmas, I came down with flu-like symptoms. I seldom sleep more than four to six hours a night, but given my condition I slept, almost motionless, for fourteen hours straight.  When I finally awoke I noticed that my left shoulder was aching. I figured that all I needed to do was get up, move around, shake it out a little bit, and I’d be fine. Not so. Through all of this I kept searching the web for my symptoms, but there were no answers, no similar experiences to be found. Over the coming hours the aching became worse.  And over the next few days the aching gave way to a much more significant pain, at times feeling like my shoulder and upper back were being shredded with hot forceps.  With my regular doctor away for the holidays, I went to an urgent care where I wa...
Source: Fox ePractice - Category: Health Managers Authors: Tags: Connecting the dots in healthcare social media Source Type: blogs