EDS Support Group in Lancaster
By EMILY PEIFFER Staff Writer firstname.lastname@example.org“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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