This is an encouraging story about a task force being created in Connecticut to address the issues for those with rare diseases like Ehlers-Danlos Syndrome.
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SHERMAN, CT (WFSB) –
A new task force is being formed to give a voice to those suffering from rare diseases.
The task force, which was approved by lawmakers, is comprised of legislators and medical experts.
It’ll help people like 14-year-old Jackie Stager, who said she had to quit ballet due to the pain she endures from Ehlers-Danlos syndrome.
“I was a dancer, an actor [and] a singer,” she told Eyewitness News.
However, Jackie said the pain was simply too much.
“It would hurt so much and I would try to explain to my teachers,” she said. “[I was] like ‘hey I can’t really do that move because it’s killing my knee.’”
“Jackie’s shoulders actually pop out of place,” said Eloise Stager, Jackie’s mother.
Ehlers-Danlos syndrome is a rare genetic disorder that stifles that ability to essentially be stable, according to doctors.
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This is A good first step. There is more work to be done to support patients and families with these rare diseases.
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