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Epidermolysis Bullosa Awareness

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Epidermolysis Bullosa AwarenessIllnesses > Genetic Disorders
The Epidermolysis Bullosa Awareness Webring is for ANY website that supports Awareness and Research for Epidermolysis Bullosa! Join today and show your support for this devastating and lethal skin condition! This ring Proudly Supports Awareness and Research for Epidermolysis Bullosa. For more information, please visit http://www.ebinfoworld.com




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And an improvement... - This is the most oddly random improvement and I'm not sure how to explain it. After all that doctor mess in Dec. I somehow got it into my head that I should go back on the Depo-Provera shot. I noticed that my gastoparesis got a lot worse around my cy... - 2012/01/18

Good news for a change - I got to see the famous EDS specialist Dr. Brad Tinkle! I had made this appointment several months ago not sure if I'd even be able to make it down. But I did! Luckily it didn't snow that day. Not a trace of snow that day. It was kind of a tiring tri... - 2012/01/18

Rude inconsiderate people at the holidays! - Again I am floored. Apparently there is someone at work who complained I am eating during work hours? I am once again very upset. It is upsetting to deal with health issues and then to have rude, inconsiderate and petty people to deal with on top o... - 2011/12/27

Dealing with it on my own. . . - So after being extremely pissed off at all doctors for about a week I decided I was on my own for now. I Googled gastroparesis and looked up what tips I could. Turns out there are LOTS of other EDSers dealing with this same nasty problem. There ARE s... - 2011/12/16

Not a happy camper - It has taken me a couple weeks to post this because I am extremely unhappy with my doctor and unsure what to do. He did diagnose me with gastroparesis but he said it was "mild." When I asked the nurse on the phone about the other findings of the scop... - 2011/12/16

Gastric emptying study - This test actually sort of sucked more than the upper endoscopy. They made me eat egg beaters laced with some nasty radioactive dye or something. I don't eat eggs anymore, so they felt like a big pile of rocks in my stomach and I felt very queasy... ... - 2011/12/01

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Everlasting Butterfly
This site is a memorial for our daughter Ava Elizabeth Medeiros that passed away from a rare skin disease called Epidermolysis Bullosa. Along with Ava's story and pics, it also contains many EB Links, EB Info, Charities, and personal stories from other Eb families.

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· Community Created 05/13/2001
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