The power of coordinated care: How Nancy found support for Ehlers-Danlos syndrome

With a rare genetic condition called Ehlers-Danlos syndrome, navigating healthcare hasn’t always been easy for Nancy Pfortmiller. For years, she’s juggled chronic discomfort, multiple doctors and numerous orthopedic surgeries. And often, she felt like she had to figure it all out on her own.

“It was all on me to coordinate everything,” she said. “I had to really become savvy.”

But when Nancy heard about the Muscle and Joint Care program available through MyBSWHealth, she felt a sense of relief. She had found a care program that connected all the pieces together for her.

“Having gone through so many surgeries before and being my own coordinator and trying to pull everything together myself, I thought, ‘This sounds amazing,’” she said.

Living with Ehlers-Danlos syndrome

Ehlers-Danlos syndrome is a condition that weakens the connective tissues in the body, potentially leading to problems with the joints, cartilage, skin, blood vessels and more. This group of disorders can make people more prone to injuries and cause ongoing discomfort.

Because Ehlers-Danlos syndrome affects the body in many different ways, Nancy needed a team of health providers who worked together. Through the Muscle and Joint Care program, she had a virtual visit with a dedicated care coordinator and received a care plan—without getting shuffled around to multiple places.

“There were so many different offerings all under the same umbrella—the pain clinic, the pain psychologist, physical therapy—all of the different components,” she said.

Many people in the program start with options like virtual physical therapy, pain management or medications. Based on Nancy’s specific needs and health history, her personalized care plan included a visit with a surgeon.

“I can’t overstate also how wonderful it was to not have to see a bunch of doctors first to get to the surgeon,” she said. “I was just expedited there—that was huge.”

Because her providers are all on the same system, they’re able to communicate and share notes in one place. And because everything is coordinated through her MyBSWHealth app, Nancy can manage her care in one place, too.

“I used the app all the time,” she said. “I was getting test results. I could read my notes after my appointments. I could refill prescriptions.”

Today, Nancy is feeling better and more in control. With ongoing follow-up and the ability to connect with her care team through the app, she feels confident in navigating her care moving forward.

“I felt more seen and cared for,” she said. “I feel like I’ve really leveled up. I’m flying first class here.”

Ready to overcome your muscle and joint pain? Get started today by scheduling your virtual visit with the Muscle and Joint Care program.