MSU graduate opens up about life with rare disorder

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EAST LANSING, Mich. (WLNS)– 21-year-old Alison Buckman plays guitar, ukulele, keyboard, and even sings. She also has a rare genetic disorder called Ehlers-Danlos Syndrome.

“Ehlers-Danlos syndrome is considered an invisible illness so someone might look at me right now and think you don’t look like you have anything wrong with you, and I actually have really bad hip pain, my back is really hurting, my stomachs upset…honestly I dislocate in front of people and no one even notices,” said Buckman.

The disorder impacts the collagen in your body. From your eyes, skin, gastrointestinal, joints, and everything in between. “Even little tasks that I think people take for granted, like showering or just walking around the block is a lot different for me,” said Buckman.

She was diagnosed at 18-years-old, and when she was starting her college career at Michigan State University. Buckman just graduated with the class of 2021.

“Honestly I think because I went to college and there’s so much walking to do, especially at MSU because it’s a massive campus, it started to effect my joints a lot more,” said Buckman.

She says she can recall symptoms dating back to when she was about 4-years-old when she had stomach issues. Buckman was also involved in a lot of sports and say she always had multiple injuries.

Buckman says she actually self-diagnosed herself before doctors did and she did her own research, but when she received her diagnoses, she says it was a relief.

“I was told by a lot of doctors that it was in my head, it was anxiety, it was more mental health and I’m not saying that doesn’t play a part, but that was definitely not what was going on,” said Buckman.

From walking across campus to classes and even socializing, she says EDS has impacted many aspects of her life.

“I’m a musician and sometimes I’m playing and I have to all of a sudden stop I have to like pop my finger back in but then you keep going,” said Buckman.

She often uses a wheelchair or cane. She also has about a dozen braces for her fingers, knees, back, and more.

Except with pain, came inspiration. “I would definitely say music is my escape, I write songs about it, I’m currently recording a song in the studio about it,” said Buckman.

With classes online this school year at MSU, Buckman says it actually helped with her grades and was able to do her work when she felt at her best. “I think I have really good management skills because of my health and I think that just transferred to me being able to excel online,” said Buckman.

Her message is that just because someone might look alright on the outside, doesn’t mean they’re not battling something on the outside. “I wish people would be more aware that not everything is super visible, it doesn’t make the pain less valid,” said Buckman.

There is currently no cure for Ehlers-Danlos syndrome.

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