adria

"Rare but strong together is the slogan of the 2012 International Rare Disease Day to be held on the rarest day in the calendar: 29th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients lives. The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases."


My disease occurs in 1 out of 5000 and 10% of the population are considered to be hypermobile it is still considered rare because it is so often misdiagnosed or goes undiagnosed. Help spread the word and raise awareness of rare and unusual conditions it really will help people suffer less. Ehlers Danlos Syndrome is so much more than being flexible and double jointed! There are many painful, dangerous, and debilitating co-occurring conditions. Not to mention the injuries, sprains, dislocations, broken bones, and widespread pain with any movement, pressure, strain on any muscle or joint. It is also progressive and I may end up in a wheelchair. There is no cure. Doctors do NOT know how to assess an EDS patient, any and all medical treatment must be different than standard procedures for non-EDS patients (even dental work). There is no medication and no real treatment. Treatment as far as it goes is "supportive" that includes physical therapy, braces to stabilize hyperextending, loose and damaged joints and wheelchairs and canes for when we get to the point where we cannot walk. I have been almost completely trapped in my house for slightly less than a year now and I would NOT have gotten a proper diagnosis if I didn't push and push and not give up and accept the apathy and ignorance and misdiagnoses pressed on me. I am hoping for some increased mobility and independence with braces for my legs and ankles and wrists that I am going to get today!