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Ehlers-Danlos Syndrome patients often misunderstood in the medical community

Wadsworths
Posted at 9:10 AM, May 08, 2023

GREAT FALLS — Medical students have been taught that “When you hear hoofbeats behind you, you don’t expect to see a zebra.” In other words, you look for the more common and usual, not the surprising, diagnosis.

Bri Wadsworth is a person with a rare and chronic disease that is looking for answers.

“It’s like being in a really bad car accident, every single day.”

That’s what it feels like to be an EDS patient but more commonly the diagnosis comes in a broad range of ideas.

“I thought maybe it was cancer. A lot of EDS patients will be diagnosed or think they have cancer or M.S., lupus, Fibromyalgia, or Lyme disease. All those things are kind of the first line that they think that they have.
 
Doctor’s appointments for EDS patients are no walk-in-the-park, typically coming in with a wide range of symptoms and specialized doctors have a tough time finding out what is going on with them.

According to Dr. Sarah Stewart, a primary care physician in Billings who diagnosed Bri says it's “A genetic condition in which a person's collagen is varied or genetically different from someone who doesn't have one of those conditions.”

Because of the wide variety of symptoms, patients are often misunderstood by healthcare providers.

“They have these misconceptions about me and EDS patients in general, what's weird is we all have this strange story. We all have the same story about the doctors and the journey we go on about not being believed, it takes forever. It takes over your whole entire life.” Wadsworth explained.

Wadsworth has visited practically every doctor in the Great Falls area looking for someone to listen and go the extra mile, whether it is Benefis or the Great Falls Clinic. She shared that depending on which doctor attended to her some told her that she was faking it, has a mental health disorder, or is looking to abuse prescription medications.

Brianne has every issue in the book and they all stem as a byproduct of her genetic disorder. Nonetheless, doctors still can’t seem to understand what she is going through.

“Okay, you come in and you don't have this thing that I'm a specialist in, so I just say, well, you don't have it and send you home,” explained Randy Wadsworth, Brianne’s father, he went on to add, “It's hard because you want to get mad at them. You want to confront them and say, she's not making this up. You're not. You're not taking the time and the effort to figure out what's going on.”

“You have doctors who are specially trained, don’t have a lot of time. Patients who have Ehlers-Danlos frequently, don't fit within the algorithms of standard diagnosis, and oftentimes standard treatments don't help. Patients with Ehlers-Danlos require a lot of time and a lot of listening and a lot of outside-the-box strategizing for how to help them with their lives.” Said Dr. Stewart.

Brianne is looking to raise awareness for Ehlers-Danlos patients across Montana and the country. She is in the works of finding treatment out of state for an up-and-coming treatment called Prolotherapy that helps with the treatment of pain and joints. She has formerly applied to a treatment program in Florida to which she was denied admittance and looking elsewhere. For Bri, each day she must tell herself to keep moving forward.

Because Brianne has taken matters into her own hands to research her health issues. Through extensive research, she discovered her father also has a milder case of EDS along with battling cancer.

The family has set up a GoFundMe account to raise money for both receive treatment; click here if you would like to donate.

Symptoms of EDS can begin at a young age but go unnoticed, if you’d like more resources on Ehlers-Danlos Syndrome, visit https://www.ehlers-danlos.com/.
Questions or comments about this article/video? Click here to contact Ryan.