Stuck in limbo

Posted April 13, 2022

a photo of Katherines hand, her thumb is bent back and touching her wrist

My Ehlers-Danlos syndrome (EDS) went undetected until I joined the army and during basic training, developed stress fractures in my hips. After being discharged and going into an Aviation Maintenance school, the pain continued and more problems began to pop up. 

After many X-rays and doctor visits, I met Dr. Olson at Duke University hospital who determined I had hip dysplasia in my right hip and impingement in my left. He was the first one to bring up hypermobility and EDS. 

I fought to have hip surgery to fix the dysplasia and get medicine (Corlanor) for postural orthostatic tachycardia syndrome (POTS). Genetic testing with the Duke medical center is backlogged and I have waited since 2018 without hearing back about the testing. My history with pain management has been a rocky road as the treatment of chronic pain has changed since the opioid epidemic. 

As time goes on more joints have become painful, such as my shoulders and knees. It is a very exhausting battle, but to any other zebras, you certainly are not alone.

Tags: , , ,

Categorized in: