How UnitedHealthcare’s Diagnostic Odyssey team helped a mom reclaim her life

Amber spent the last several years trapped in a body she didn’t recognize. Her pain may not have been visible, but it was debilitating, and without a diagnosis, she was left feeling like she was spinning her wheels.

“I had 27 appointments in two months and I had no answers,” she said. “I had no more answers than I did when I started.”

At her worst, the act of simply showering often meant the rest of her day was lost to fatigue. She couldn’t attend family functions

“I have a 7-year-old who wants me to run and play with her and get up on the swings and run on the playground,” she said. “And when vacuuming half of your living room forces you to lay down for an hour, that's a problem.

Doctors couldn’t explain what was causing Amber’s symptoms, and each day her quality of life was worsening. The hardest part was having to say no to her daughter, who didn’t understand why mom didn’t have the energy to play.

“Having to make excuses to my daughter, having to explain to her, ‘I'm sorry, mommy's sick. I'm sorry that mommy doesn't feel well enough,’ it is devastating. I mean, there would be times where I would just cry because you feel like a failure,” Amber said.

Due to the complex nature of Amber’s case, she was connected to the Complex Care Concierge program, which reviewed her case and brought it to a colleague who could help. From there, Amber was connected to UnitedHealthcare’s Diagnostic Odyssey program,¹ which changed everything for her.

The Diagnostic Odyssey program is designed to support members with highly complex or rare conditions who struggle with an unresolved medical diagnosis. The program helps mitigate challenges like delays in treatment, increased costs and uncertainty about what comes next with their care.

As a part of the program, a team of experts helps connect the dots, works to uncover a unifying diagnosis and creates a plan of care for members like Amber to move forward. This can include a connection to specialized medical centers that can help them find answers quickly.

Through the Diagnostic Odyssey program, Amber was connected to Nurse Shanna, who helped walk her through finding the proper care.

“I reached out to Amber, and the very first thing I heard in her voice was despair. She was so frustrated,” Shanna said. “I felt like there were big improvement areas needed in her independence and her ability to feel safe.”

Shanna connected Amber with a team of specialists who could help get her on a journey to improved health. From there, Amber said finally someone was looking at the whole picture – and providing a more comprehensive assessment into her care plan. She was officially diagnosed with Hypermobile Ehlers-Danlos syndrome² (EDS) and a few other diagnoses were ruled out. She was also provided a treatment plan and medication adjustments to help her better manage her symptoms.

“They looked at me as a whole and they said, ‘OK, here's a ton of information,’” Amber said. “Because of the Diagnostic Odyssey program, I now have a much better handle on everything as a whole and how to go about taking care of myself better. It's a game changer and I am so thankful for it.”

All along the way, Shanna called Amber to check in and see how things were going and if she needed help, creating a bond that Amber said she cherishes deeply.

“I immediately felt like I had a connection with Shanna because she cares,” Amber said. “She became my best friend. We talked constantly. She held my hand through the entire process and answered any questions I had. She was on top of it.”

For Shanna, it’s why she loves her job – being able to support someone in a meaningful way and help them on a journey to become healthier.

“It makes me feel like I'm a huge part of the jigsaw puzzle piece that clicks right into place for them so they can find their answers, get on the right medication, get on the right therapies and live a better life,” Shanna said.

Today, Amber is feeling a lot better — still not at 100% — but she once again recognizes the woman she was. She’s able to take her daughter to play at the park, and her constant no’s have become more yes’s.

Amber said she’s so grateful a program like this exists to help people like her who are lost trying to navigate a complicated health journey. More than anything, she’s grateful to Shanna, who’s not only become a lifelong friend, but has given her a huge piece of her life back.

“If I could say one thing to Shanna,” she said, “I would tell her that she is one of the best people I've ever talked to in my entire life.”

Moments later, Amber turned around and was surprised by Shanna standing behind her. Watch the video above to see their emotional meeting.