When you first meet Ashley Hurst, you see a fun and energetic woman with a bright smile. She is friendly and outgoing. She spends time as a freelance photographer and mother of one. In short, she looks every bit the part of a normal, healthy 30-year old woman.
It is that persona that makes it both surprising and inspiring to learn that Ashley suffers from Postural Orthostatic Tachycardia Syndrome (POTS) and a type of Ehlers-Danlos Syndrome (EDS). EDS is a rare, inherited disorder that affects connective tissue, which is similar to “glue” that holds our bodies together. When this connective tissue is faulty, it can cause joints to dislocate completely. People that suffer from EDS often experience chronic pain as well.
POTS is a more common condition that affects blood flow. Symptoms can include lightheadedness, fainting, and rapid heartbeat.
She seems to manage both of these conditions as well as one could. She regularly does yoga and light weight lifting to strengthen her joints.
Collaboration and the Integrated Model
“The most frustrating part was for a long time, doctors would kind of blow me off and prescribe painkillers when I visited them in pain,” explained Hurst, citing the rarity of EDS and doctor’s lack of expertise on the condition as a factor. “Today, I have a treatment plan that has changed my life.”
That treatment plan came when she first saw a Nurse Practitioner at Valley-Wide Health Systems. Hurst described the NP as “the only person who would listen.” Unfortunately, the NP moved on to another opportunity but that led to Hurst seeing Dr. Kris Steinberg, also of Valley-Wide, and right at the time she became pregnant with her son.
“I called Dr. Steinberg and left a message,” she explained. “When I arrived for my appointment, I instantly felt comfortable because Dr. Steinberg showed up with books and materials about my condition, which no one had ever done before.”
“Ashley has been a joy to work with because she takes an active role in maintaining health and wellbeing,” noted Dr. Steinberg. “She is a good example of how we can be healthy while still managing a chronic disease or challenge.”
Dr. Steinberg would also refer Hurst to a cardiologist, geneticist, and maternal fetal specialist, in addition to making a personal call to Ashley Absmeier, Valley-Wide’s Director of Physical Therapy.
“Just like Dr. Steinberg, Ashley also showed up with lots of materials about my condition and this made me feel great,” said Hurst. “We went through a lot of PT and prenatal yoga.”
Hurst describes yoga as a full-time job today. Absmeier quickly noticed that commitment.
“The biggest thing about Ashley is her dedication and willingness to put the work in,” said Absmeier. “When doing something as simple as pulling your shower curtain can dislocate your shoulder, most people would be hesitant to participate in Physical Therapy. Ashley is an exception.”
Patient Advocacy
“There is a stigma with having a chronic condition, yet looking as if nothing is wrong,” Hurst stated.
She needs to be able to lie down, apply a heating pad to pain, or any number of accommodations to manage her condition. This prevents her from having a full-time job.
“I was close to graduating from college when the pain became unmanageable, and I didn’t ge
