EDS Support Group in Lancaster

This EDS Support Group  is promoting EDS Awareness in Lancaster.
GabriellaBy EMILY PEIFFER   Staff Writer        epeiffer@lnpnews.com
“You may notice something different when you pay for your morning coffee at  Turkey Hill.
Donation jars for Ehlers-Danlos Syndrome, a rare genetic  disorder, are now at the checkout counters of four local Turkey Hill  markets.
The driving force behind the fundraising effort — the Leba  family —knows this disorder all too well.
Gabrielle Leba, a rising junior  at Lampeter-Strasburg, suffers from the condition, which affects one in 5,000  people.
She was diagnosed in 2011 with EDS, an inherited disorder that  affects the connective tissues in the body. Since then, her world has been  turned upside down.
“It’s been really rough,” Gabrielle said. “It’s a  struggle knowing that you have to live with it for the rest of your  life.”
Her mother, Dolores Leba, said she wants to do whatever she can to  raise awareness for this relatively unknown condition.
“It’s rarely  diagnosed properly. Some of the doctors we talked to didn’t even know about it,”  she said.
May is recognized internationally as EDS awareness month. Leba  said there are countless events and fundraisers for EDS around the world, but  local attention is minimal.
She put out donation jars in Turkey Hills  last year as well, raising around $100. All proceeds are sent to the  Ehlers-Danlos National Foundation for research.
Gabrielle’s health  problems began in 2004 when she was diagnosed with atrio-ventricular nodal  re-entry tachycardia, and later with postural tachycardia syndrome. Symptoms of  these conditions involve a rapid heartrate, especially when sitting  upright.
Within four years, Gabrielle underwent three heart surgeries.  Then in 2011, she was diagnosed with EDS.
“It’s gotten worse in the past  two years. Each day is a really hard task,” Gabrielle said.
Symptoms of  EDS include loose joints, fragile skin, muscle pain and fatigue. Gabrielle’s  condition has forced her to attend school on a limited schedule, usually going  in for a couple days a week.
“The school has been really helpful.  Everyone’s pretty understanding,” she said.
She has also needed to give  up some of her favorite activities and hobbies, including the swim team, school  musicals and the orchestra.
One of Gabrielle’s most prominent EDS  symptoms involves pain and weakness in her shoulder. Therefore, she could no  longer hold up the violin, which she has been playing since the fourth  grade.
Gabrielle has fought, however, to keep music in her life. She  taught herself how to play the ukulele, and she wants to go to college to study  music and vocal performance.
“Music is therapeutic for her,” her mother  said.
Gabrielle’s family has served as her main support system throughout  her illness. Her mother and two siblings all suffer from some form of the  disorder, but Gabrielle has encountered the worst symptoms.
“It’s a  roller coaster. Every day is different. Just getting up is a difficult  task,”Leba said.
The Leba family organizes a support group for other  families dealing with EDS. Like the condition, support groups for EDS are very  rare. People have come from various counties to find others suffering from the  same disorder.
“When people finally get diagnosed, they feel so alone. If  it’s not a well-known disease, you are left out,” Leba said.
The  meetings, which began in May 2012, take place every other month. Leba said they  usually have 15 to 20 participants.
“It takes awareness and money.  There’s no cure for this lifelong, progressive, degenerative illness,” she  said.
Gabrielle said that despite the difficulties that come with her  condition, she keeps looking forward. She said, “You just have to try to live  your life.”
The next EDS support group will be held at 3 p.m. on July 20  in Barnes & Noble in the Red Rose Commons Shopping Center.”

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