ZEBRA'S LETS DAZZLE TOGETHER AND MAKE OUR INDIVIDUAL STRIPES BE HEARD

    EDS (EHLERS DANLOS SYNDROME) and HSD (HYPERMOBILE SPECTRUM DISORDERS). Born with a mutant Gene, where there is no cure. Living with the pain and disabilities of these rare Genetic diseases from the day we we're born . Being branded as Hypochondriacs and whatever else the medical profession chooses to brand us as. Being misdiagnosed as fibromyalgia or, "It's just all in your head,"
    NO, the pain and struggles of EDS,HSD are very real and made so much worse by nobody listening. My whole life searching and looking for answers, yet getting GP putting on my medical file that I have mental health issues, when in fact I am ASD (AUTISM SPECTRUM DISORDER)..
    All those like me face the same daunting battle just to be heard. Our GP's refusing to listen and hear what we are saying, when in fact, all the signs have been there for the duration of our lives, yet ignored. Struggling in silence and alone in the dark. Having to fight to get any professional assistance and many Doctor's and medics being misinformed and wrongly educated about EDS. My whole life just a roller coaster ride, being passed from pillar to post and back again with no understanding and most of all a never ending battle that has no doubt further added to my health and quality of life.
    I am concerned for many reasons. It is too late for me but as our children have a 50/50 chance of inheriting the mutant Gene something has to change if there is to be any hope for our future generation and for history not to repeat itself.
    There needs to be more awareness and the medical profession need to be educated, especially that no to EDS sufferers are the same. They need to understand that just because one is not double jointed, it does NOT mead they do not have EDS. This condition only deteriorates as time goes by and many of us face the chance of being in a wheelchair further down the line. There needs to be support, understanding and awareness, for GP'S to listen to their patient and do a full medical background check before wrongly diagnosing .
    It is nothing more than a breach of our basic human rights, that we are treated so differently to those with any other life long incurable disease.
    We stand together as a dazzle of Zebra's and for our hooves to be heard and our stripes to be recognised as unique to each individual. We just want what is only fair in order we no longer have such an exhausting and life long battle just to be heard or to get the treatment that we so need.
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