ASH Honors Blog: Life with Ehlers Danlos Syndrome (EDS)

Life with Ehlers Danlos Syndrome (EDS)

My name is Miranda Hurley, and I have a rare genetic disorder called Ehlers Danlos Syndrome or EDS, and this is my fabulous, ongoing love filled journey.
A little background on Ehlers Danlos: it’s a group 13 of connective tissue disorders mainly characterized by velvet-like, stretchy skin, loose joints, and abnormal wound healing. On average, if there is no prior family history that puts doctors on alert, it takes 28 years to be diagnosed with EDS.

As a baby, I had all the early signs of EDS, but these signs are simple things like dental crowding, large eyes, a small chin, thin lips, and pale soft skin that easily bruises. These vague symptoms of EDS are why children aren’t diagnosed early. In my case, it took 15 years to be officially diagnosed.
My older cousin, Maddie, was the first in my family to be diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS). hEDS can’t be tested for genetically because it is unknown what gene is affected by hypermobile EDS. Maddie was diagnosed during a surgery when a doctor realized how thin her cartilage was. He said, “It was like looking through glass.” If, like me, you never learned much about cartilage in middle school biology, just know that cartilage is not supposed to be transparent. Alarmingly, if it wasn’t for Maddie’s surgery, then probably none of my family would have ever received a proper diagnosis.
Maddie and I have become extremely close over the last two years because of our shared diagnosis. We have the same doctors, and we receive the same treatment so we always know what the other is going through. After the opening of a specialized EDS clinic in New Orleans, we are able to go to appointments together and even enjoy some shopping downtown, a deserved treat after four shots in my back and eight shots in Maddie’s stomach.

I say this with no sarcasm: I am grateful to have won the genetic lottery. Because of EDS, I have become closer with my cousin. In no way has hEDS negatively affected my life. On the contrary, overcoming the small challenges that it does give me shows me everyday that I am stronger than I think.
To learn more about EDS and how you can become involved in saving and improving the lives of people with this diagnosis, click here.