FRAGILE, but UNBREAKABLE: May is Ehlers-Danlos Awareness Month

Posted May 2, 2018

Baltimore, MD, May 2, 2018  – Spring is a time of renewal. For those living with one of the rare, primarily heritable, connective tissue disorders which comprise the Ehlers-Danlos syndromes (EDS) and the hypermobility spectrum disorders (HSD), winter can be the most painful and debilitating part of the year — and May, with its Ehlers-Danlos Awareness Month, rarely arrives soon enough.

“Ehlers-Danlos Awareness Month strengthens our community by raising awareness about EDS, HSD, and the related medical conditions our community too frequently endure,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global nonprofit organization headquartered in Baltimore, Maryland.

“Ours is a fight to improve access to better, earlier diagnoses, effective treatment options, and ultimately, new standards of care for EDS, HSD, and related conditions ranging from unstable joints, chronic pain, and poor wound healing, to migraines, mast cell activation disorder (MCAD), vascular, autonomic, neurological, and gastrointestinal complications,” continues Bloom, an EDS patient herself.

“For too long, patients have been forced to wait years, even decades, for proper diagnosis. In the past three years, our progress has been exponential. With the 2017 EDS classification, health professionals now have the criteria necessary for more accurate diagnoses and more consistent management and care,” Bloom adds.

Dr. Clair Francomano, director of The Ehlers-Danlos Society Center for Center for Clinical Care and Research at the Harvey Institute of Human Genetics, Greater Baltimore Medical Center, and chair of The Ehlers-Danlos Society’s medical board, adds: “With the energy, commitment, and generosity of our donors, medical professionals, and the entire Ehlers-Danlos community, we’ve finally achieved a critical mass in Ehlers-Danlos research, where it is now possible to make dramatic leaps in our understanding of EDS, HSD, and myriad related disorders affecting our patients.”

“In launching our ‘Moonshot’ to discover the genomic underpinnings of hypermobile EDS, the International Patient Registry, numerous global research collaborations, ambitious new medical education programs, regular medical and scientific symposia, and an ever-growing number of learning conferences for those living with EDS and HSD, our community is finally moving forward.”

For this year’s Ehlers-Danlos Awareness Month, the Society seeks to better connect its community to each other, to their caregivers, and the world at large, through social events, awareness activities, and rallies to be held from Austria to Australia, under the theme #FragileButUnbreakable. “Individually, our bodies may be ‘fragile.’ But, together, with the support of our loved ones, our community, and our health professionals, we are ‘unbreakable’ in spirit,” states Shani Weber, Local Groups & Outreach Liaison for the Ehlers-Danlos Society.

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