Task force aims to help patients of rare diseases - WFSB 3 Connecticut

Task force aims to help patients of rare diseases

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Jacqui Stager suffers from the rare Ehlers-Danlos syndrome. (WFSB photo) Jacqui Stager suffers from the rare Ehlers-Danlos syndrome. (WFSB photo)

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.

Jackie said each step can be painful. She said it’s led to eight emergency room trips over a two year span.

“Not a single medical doctor in the ER we've come across really knows much about Ehlers-Danlos syndrome,” Eloise Stager said.

Jackie said there’s little treatment and the syndrome has led to other painful ailments affecting her entire body.

In efforts to help people like Jackie , state lawmakers approved legislation last session aimed at creating a task force specifically for rare diseases.

Lawmakers said the idea came from a woman who asked Rep. John Hampton, who serves the 16th district of Simsbury, for help. The woman said her disease was not covered by insurance.

Hampton said his task force is still a work in progress.

“[It was created] to make recommendations that hopefully establish a permanent council that will stay active throughout the years recommending legislation to the General Assembly making recommendations of how to better support these families,” Hampton said.

That may mean more diseases being covered by insurance, money for research or higher awareness.

It could perhaps one day mean a cure for Ehlers-Danlos syndrome.

“It would definitely enable me to go back doing what I want to do in life,” Jackie said.

Hampton said the task force will meet and make recommendations by January. He hopes it will be a permanent group.

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