Target: Yvette Cooper, UK Secretary of State for Health and Social Care
Goal: Better prepare healthcare professionals to help patients with hypermobility health conditions.
It’s a condition that can cause chronic, intense pain, dislocated joints, migraine headaches, and severe gastrointestinal, neurological, and psychological issues. Sufferers report high rates of unemployment, educational derailment, disruptions to daily living, and – in the most extreme cases – suicide attempts. Yet this condition is so scarcely understood, even in the medical world, that individuals inflicted with it can spend decades in limbo…with an average diagnosis set at more than 20 years after the onset of symptoms.
Hypermobility spectrum disorders are inherited diseases that impact connective tissue throughout the body. By some estimates, only five percent of people who have the condition are ever diagnosed at all. A recent study out of the United Kingdom starkly highlighted the devastating toll this unforgiving condition takes on sufferers. Despite this toll, hypermobility disorders remain grossly underfunded, which has contributed to the lack of knowledge many physicians have of the ailments.
Sign the petition below to compel the United Kingdom to close this glaring support gap with strong investment.
PETITION LETTER:
Dear Secretary Cooper,
“My life has been defined by chronic pain and fatigue. For eight years, my nervous system has been so unstable that I have frequently been unable to read, watch TV or tolerate light. At my lowest, I could not spell basic words or speak in coherent sentences.”
The preceding harrowing summation represents just one story of a patient living with the reality of hypermobile Ehlers-Danlos syndrome. This condition that ravages nearly every area of the body is part of a little-understood and studied spectrum of hypermobility disorders that wreak havoc on connective tissue. The pain and uncertainty become so severe that upwards of half of sufferers endure unemployment, and roughly one in five attempt suicide.
A University of Edinburgh study found massive diagnostic gaps across the United Kingdom of between 19 and 21 years after onset. And these are just the individuals who are diagnosed. Many, many patients remain undiagnosed or misdiagnosed. Funding and a dedicated effort to strengthen medical training in and knowledge of these conditions could make all the difference.
Please take these steps so countless more individuals will not have to suffer alone and in darkness.
Sincerely,
[Your Name Here]
Photo Credit: Kindel Media
