MANSFIELD – When 2019 Miss Ohio winner Caroline Grace Williams was diagnosed with Ehlers Danlos Syndrome (EDS), Type III, she felt a sense of relief.
For many years, she experienced fainting spells, an accelerated heart rate and nausea. After going so long with no diagnosis, she began to think she was a hypochondriac.
Now, the Cincinnati native who will be in Mansfield this week to crown the next Miss Ohio on June 19 is able to look back on everything she went through with a perfect understanding of what she was experiencing.
“It was finally something that made sense and was an explanation for why I had felt the way I felt all those different times in my life where (my family and I) just brushed it off,” Williams said.
It is rare to be diagnosed with EDS at Williams’ age as it is most common in older adults. Because of that, her EDS went overlooked by doctors and was only used as a “last-resort diagnosis.” Before that she’d visited a cardiologist for months and wore a heart monitor, however, the doctors could not find any abnormalities.
To be diagnosed with EDS Type III, you must display a series of symptoms. Williams’ symptoms included atopic scarring, dental issues, a family history of hypermobility, bending both left and right pinkies past 90 degrees, the ability to place your palms on the floor while bending over and more.
“It is classified as a rare disease, but we don’t know if it’s just under-diagnosed,” Williams said. “Or maybe it is more common. But with further education, we can come to these conclusions.”
Williams’ doctors discovered she had EDS through her other disease, Postural Orthostatic Tachycardia Syndrome (POTS), which is a heart condition that can accompany EDS.
Although there is a connection between EDS and POTS, there is no scientific evidence to explain why.
A third disorder, Mast Cell Activation Syndrome (MCAS), can also accompany EDS and POTS. Williams has not been diagnosed with it so far, though she is being monitored closely for a potential triad diagnosis and takes two daily allergy pills after presenting with a few symptoms.
EDS can express itself differently in everyone. Some symptoms include chronic pain, joint dislocations and unexplained medical issues. Because there is such little research, there is no research into why EDS can present so inconsistently.
On some days Williams will feel “normal” with no pain or sign of EDS. Other days she is fatigued and light-headed. As a competitive person by nature, she can often become frustrated when she can’t do something because her body cannot handle the stress, but she continues to do what she can.
“I’ve learned to be accepting of myself and my abilities and what I can and cannot do but also hold myself accountable for what I can do and encourage myself to be strong and push forward,” Williams said.
There is no treatment for EDS. Instead, individual symptoms are treated. Williams is encouraged to increase her salt intake to increase blood volume.
Each year, every Miss Ohio winner must choose an important issue they’re passionate about advocating for the entire year of their reign. Williams chose emergency services, particularly text to 911, and getting that implemented statewide. She’s also promoting it in the counties where it’s available, which goes hand in hand with EDS and POTS because people with disabilities can have easier access.
With the connections she’s built since becoming Miss Ohio, Williams has met others with her rare condition. The group of friends she’s made she can confide in and ask for advice on how to stay healthy and discuss the specialists she shares in common.
“Being honest and sharing my personal journey was something that I wanted to do from day one,” Williams said.
Currently, Williams is doing work in South Carolina with one of the only clinics in the world doing extensive research on EDS.
“I think that a lot more people likely have EDS and they just don’t know,” Williams said. “Because a lot of times, you are not going to seek out the medical attention you need… And so I think even just people being aware of it could really save lives.”
