A rare disease that affects one in 10,000 people has impacted the joints, skin and bones of two South students.
Sophomore Megan Beagley and freshman Caroline Bennett have been permanently affected by type three of Ehlers-Danlos Syndrome (EDS).
EDS is a rare genetic disorder. There are six types of EDS and each of them have unique defects in the connective tissue, but all have a few things in common like joint laxity, soft skin and easy bruising, according to The Ehlers-Danlos Society.
“I’m walking most of the time and then I just fall randomly, because my hip will dislocate or my knee will give out, or something like that,” said Beagley.
Beagley and Bennett were both diagnosed with type three of EDS, hypermobility. This type affects their large and small joints like elbows, knees, fingers and toes. They experience frequent joint dislocations and joint pain.
“My knee caps will slide off to the side sometimes, my ankle will give out a lot, my knees give out a lot, my right hip dislocates, my left shoulder dislocates every time I try and raise it and my right hip dislocates every time I take a step,” explained Beagley.
Last month, Beagley got fitted for knee braces specially made just for her.
“The knee braces help a lot. I have to wear one on each knee and it helps stabilize them a little more. Each knee brace has a metal hinge on the sides to keep the knee is place and still allow me to bend my knee,” said Beagley.
Physical activity helps Bennett avoid pain. She is more limited to the things she can do, but has worked up her strength through physical therapy to get to where she is now.
“Exercise actually helps me. If I’m exercising more then it’s less painful,” said Bennett.
She is used to doing physical activities often, including yoga every day and dance three times a week. Once when she didn’t get all the exercise that her body was used to, she said her body reacted with pain.
“I tried to pick up my backpack for school and my fingers and my wrist just were extremely painful, and I didn’t want to move,” said Bennett.
Bennett said that physical activity helps her cope with pain. On the other hand, Beagley cannot do the same activities she used to do before being diagnosed. Her dreams to join track were halted after the diagnosis.
“I’ve been doing physical therapy once a week for a few months now but it doesn’t seem to be helping a lot… The doctors keep telling me it will take a while for it to actually start helping so I have to keep doing it,” said Beagley.
Bennett’s brother, Ryan Bennett, feels sympathy for anyone who has EDS. He felt sorry for his sister after the diagnosis. Together they have learned more about the disease and how to react.
“Ehlers-Danlos Syndrome hasn’t changed too much on our lives personally, but it’s changed the way that we treat symptoms,” said Ryan Bennett.
Beagley’s sister, Anna, said the journey that Megan has taken to getting diagnosed has been an eye opener. Not much has changed at their house, but there is a chance that Anna has EDS as well.
“I don’t think about it a lot, just because I don’t have as many symptoms of it as Megan does. But it’s in my life and at some point. I’ll see if I get diagnosed with it,” said Anna.
Whenever a joint dislocates, it’s difficult to pop it back in yourself. Luckily, Megan has Anna for that.
“Anna’s the only person that really knows how to pop my hip back into place. She says it’s easy for her but I can’t ever get it myself. If someone tries to pop it back in but does it wrong it makes my joints hurt more. Luckily Anna knows how to do it otherwise I’d be in a lot more pain more often,” explained Beagley.
Although EDS causes difficulty in their lives, it also brings relief and eagerness. Beagley was tremendously relieved when she was diagnosed
“It was really hard for me, because it took so long to get the answers that I actually needed. But it helped to know that I actually did have it and I wasn’t just like making anything up… It took two and a half years to get diagnosed and when I finally got the results from the geneticist, I started crying,” said Beagley.
Out of the 1,600 students we have here at South, we don’t think about the fact that we have two students who struggle with the same rare genetic disorder.