By ALLISON HERR, 17
freestyle@lnpnews.com

TEEN FEATURE

“Sixteen-year-old Karley Hill exudes optimism and is able to share that optimism easily with others. Though it hasn’t always been easy for her to look at the bright side of life.

Hill, a junior at Penn Manor High School, was diagnosed with Ehlers-Danlos Syndrome in April 2012.

In her own words, Ehlers-Danlos syndrome is, “a genetic disorder, where there is a default in the collagen — the glue to your body — and everything’s loose; your joints and skin can be hypermobile.” Hill has Type III Ehlers-Danlos syndrome, which means her joints stretch further than normal, and can dislocate quite often. Because of this condition, she is in pain all the time, she says, but her bubbly personality would tell you otherwise.

In 2011, Hill’s shoulders started dislocating while she was playing basketball. After being referred to five different hospitals and having three surgeries in an attempt to help her shoulders stop dislocating, Hill was diagnosed with EDS.

The Ehlers-Danlos National Foundation’s website, ednf.org, says it affects 1 in 2,500 to 1 in 5,000 people. “It is known to affect both males and females of all racial and ethnic backgrounds,” according to the site.

Since it was such a rare condition, it was difficult for Hill and her family to find a doctor who could diagnose EDS.

After her diagnosis, Hill was looking for something active to do and began riding at Triangle Therapeutic Riding Center in Reinholds.

For Hill, riding gives her the chance to get away from everything that is happening in her life and focus on the horse.

“I ride once a week, but I would ride every day if I could,” Hill says.

Hill’s training involves strengthening her core, to help her overall balance. The strength training can be pretty painful, Hill says, but, by building an emotional connection with the horses, it helps Hill to focus on riding and not her pain.

According to Hill, there’s no other feeling like being on her horse.

“Besides all of that, I am granted a sense of freedom when I’m on a horse,” Hill says. “I can move effortlessly, where my own two legs aren’t always able to fulfill that task.”

She also has used the therapeutic riding to participate in her first horse show in May. According to Sharon Hill, her daughter accomplished something that they were not sure she would ever be able to do.

“On May 25, one year to the day when she was in a wheelchair fulltime and suffering from paralysis in her arm, she competed in a Horse Show at Thorncraft Equestrian Center in Malvern,” Sharon writes in an email. “She was awarded a ribbon for each event that she competed in.”

“The show is like any other (riding) show,” Hill says. “Everyone in it has some form of a disability, and there were five riders from my barn.”

Hill performed in three events — a dressage test, equitation and a trail course. She is hoping to continue with shows in the future.

Hill says her biggest support is her family. Her mother, Sharon, is always there for her — to drive her to doctor appointments and help her on her bad days. She also says her little brother and sister, as well as her physical therapist, are big supporters.

Hill realizes that EDS will be part of her life, most likely forever, but she does not let it control her life. She is looking forward to a successful future and always sees the positive aspects of life. She hopes to be a doctor, because she wishes she would have had a doctor who knew what she was going through and hopes to be that person for a child someday.

Even though there is currently no cure for Ehlers-Danlos syndrome, Hill hopes that eventually there will be — if not in her generation, then in future ones — so that others (such as her kids) can be free of it. She says she has come to terms with having the condition forever, but she wants to raise awareness that Ehlers-Danlos syndrome is real, and that a cure needs to be found.”