Thanks to the efforts of a Newburyport woman, the governor has declared May as Ehlers-Danlos Syndrome Month in Massachusetts.
Diana Cleaveland, who was diagnosed in 2010 after years of wondering what was wrong, has made it her mission to raise awareness of the genetic condition.
“I was sick my whole life, and nobody knew why,” she said.
Ehlers-Danlos syndrome is a group of incurable disorders that affect connective tissues in the body, according to the National Institutes for Health. Approximately 1 in 5,000 people is born with one of the six major types of EDS.
Symptoms range from loose joints to life-threatening complications. Most people with EDS experience an unusually large range of joint movement, according to the NIH.
Cleaveland, 51, who was born with dislocated hips, has suffered a variety of ailments throughout the years, including a bleeding ulcer around age 9 and ovarian cysts and hematomas after she had her daughter. She recently underwent ovarian and brain surgery.
“I went from a slow degrading to all of a sudden falling off a cliff,” said the former singer, songwriter and violinist.
But she stays positive by trying to help others with the condition and through the support of her husband, Craig. She also runs a Facebook group that connects people with EDS and is the director of communications for the Ehlers-Danlos New England/MA Support Group, where she recently met another local woman with the condition, Kyleigh Dachos.
Dachos, 27, of Byfield, was just diagnosed in January. Since she was a child, she has had symptoms that include an intolerance to exercise, sitting and standing; severe fatigue; joint pain; headaches, dizziness and fainting; palpitations; memory concentration problems; hypermobility; and chemical sensitivity. She recently had surgery because her chest was crushing her heart.
“I can breathe now, but I still have heart issues,” she said.