Living with Ehlers Danlos Syndrome: How 2 Texas women are flourishing with the condition

Rosie Nguyen Image
Wednesday, July 27, 2022
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An aspiring gymnast wasn't able to go forward with the sport she loves due to what is being called an invisible disability. Now, a Houston clinic founded by someone also afflicted with the syndrome is giving patients hope.

RICHMOND, Texas (KTRK) -- Tuesday marks the 32nd anniversary of the Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination and ensures that people living with disabilities are afforded the same opportunities as everyone else. However, some people living with Ehlers Danlos Syndrome (EDS) said there are still stigmas for invisible disabilities and believe more needs to be done to improve their quality of life.

Brooke Bloom, who grew up in Houston, was a competitive gymnast and although injuries were not uncommon in her sport, she knew something just wasn't sitting right with her body.

"I had a lot of strange things that were going on. I had dislocations, (and) broken bones. I was always broken in one way or another. I was also having a lot of issues, losing my vision when I stood up," she said. "I was injured more frequently and would take longer to heal. But I was also functional, so we didn't push for answers at that point in time."

She remembers constantly having pain in her back and feet ever since she was a little girl, and would experience vision loss while standing up. After starting college, she began having issues with her G.I. tract. Bloom was often fatigued, feeling breathless after minimal physical activity, and experiencing fainting spells. But she would always power through school and work, concerned about how others would respond to her invisible disability.

"I was always concerned that if people knew about what I was facing, they would put limitations on me," Bloom said.

It wasn't until she and her mom saw an episode of "Mystery Diagnosis" that they learned about Ehlers Danlos Syndrome and made the connection. She met with a geneticist shortly after and received an official diagnosis.

"It was very validating. It answered a lot of questions that we had. Looking back now, the last six years have been a lot more difficult than prior to my diagnosis. If I didn't have that, it would have been so much harder with the complications that have come up since then," Bloom said.

Dr. Sarah Kelly with the Kelly Clinic explains EDS is a set of disorders impacting the connective tissues in someone's body. Some of the common side effects are joint pain, dislocations, overly soft skin, and a longer healing time for open wounds. People living with this condition can often feel extremely fatigued or in pain, impacting their day-to-day lives.

"Most of the patients I see have had almost all of this happen to them, where they've been shamed by physicians who have said, 'It's all in your mind. This is not real. What you're experiencing can't possibly be one disease,'" she said. "I have had patients who have handicap placards and were accosted by people in parking lots, saying they're too young or they look too healthy. This can lead to more psychological issues, because patients will start to internalize that they're not getting heard."

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Kelly also lives with EDS and said she opened up her own clinic after struggling to find adequate care for herself. She says current medical literature estimates that anywhere between 1 in 500 to 1 in 2,000 people have EDS.

"I feel like this was something that I was put on this earth to do and it was something, easy or not, where I could give back to others," she said. "I was born with a broken clavicle and had some pretty significant hip disease as a child, where I had to wear braces on my legs at night. The medical field didn't really understand this disorder when I was born and they don't really understand it much more now."

She went on to add, "Now, I'm feeling the healthiest I've ever been. I've had more than 15 surgeries. I've had sepsis. I've been coded twice. But I haven't spent a day in the hospital in seven years for someone who was in the E.R. almost every week for two decades."

After developing complications that doctors were unable to treat, Bloom began seeking care at the Kelly Clinic. She said her medical team now is working to figure out the best way to manage her symptoms. Soon, she will start her first year of medical school at McGovern and hopes to eventually help others with their own health conditions.

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As Bloom and Kelly reflect on Disability Pride Month and the 32nd anniversary of the ADA, they hope their stories will show that despite their condition, they can still live rich and fulfilling lives.

"Celebrate who you are. Now that I'm studying to become a doctor and I've also lived as a patient, I see how much benefit there can be in the patient perspective," Bloom said. "We need to have a society that is more open to supporting people, even when you don't know what's going on with them."

"As I've said to some patients, some disabilities should be seen as actual superpowers. You just need to figure out what that is, how to harness it, and appreciate your unique gifts," Kelly said.

For more information about the Kelly Clinic, visit its website.

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