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If you’ve followed me for any length of time, you probably know that myself and two of my children have a rare connective tissue disorder called Ehlers-Danlos Syndrome (among other comorbid conditions). This is a disorder that impacts every single system in our bodies and there is no cure, and no real treatment.
Typical symptoms include:
- Joint dislocations
- Chronic, debilitating pain that pain medication can’t even touch
- Fatigue (many have narcolepsy, myself included)
- Digestive issues
- Impaired healing
- Issues with local anesthesia
- Skin problems
But because each person with EDS is unique, and because the symptoms can be so different from one person to the next, it’s often called “The Great Imitator.” This is because so many of the symptoms mimic other conditions, making diagnosis difficult.
For me, I didn’t get a diagnosis until I had a random physical after attending a Renaissance Faire in my late 20s. While at the fair, I did archery, and my arms bent in a way that the elbows got in the way of the string on release. This caused a terrible bruise the length of my arm. I thought it was normal, and my doctor assured me it wasn’t. That led us down the rabbit hole to get a diagnosis for these weird symptoms.
The pieces start to fit together, when you find out that almost every symptom can be attributed to EDS. It made my late father’s symptoms fit into place as well. We often joke that we are “held together with duct tape” because our joints dislocate so easily. We are also susceptible to a number of other serious health issues, including organ prolapse and life-threatening blood pressure instability. Because of this, I have to be very careful about my own health and the health of my children.
This means frequent visits to MercyOne when we sneeze and subluxate a rib, or roll our ankles while performing everyday duties. They help us live our best lives by providing us with the best possible care. Whether it’s preventive measures to keep us healthy, or reactive treatments when we’re not feeling our best, MercyOne is always there for us.
While I have a small army of world-renowned doctors outside of the state (it’s that rare of a condition, there are few specialists!), knowing that I have a trusted team of MercyOne specialists to rely on is helpful. Why? Because it’s a system of hospitals, clinics, and healthcare facilities that are all connected. This means that my MercyOne primary care doctor can consult with other MercyOne specialists, as needed, to ensure I’m getting the best possible care.
For chronically ill patients, like myself, this is invaluable. It reduces duplicate tests, ensures that all of my specialists are on the same page, and provides me with a sense of security and peace of mind. It’s why I’ve been able to travel to 29 countries (and counting), have been able to write three books, and write for major publications I only ever dreamed of. When we’re getting the best possible care, we can live our best lives. And MercyOne has helped me do just that. If you don’t have a primary care physician, check out MercyOne’s matching tool – it’s basically like matchmaking to find a doctor you love!
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