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Local moms try to raise awareness of genetic condition
January 15, 2017
There's nothing worse than suffering from symptoms that no doctor can explain. With every negative diagnosis, we begin to feel like maybe we're becoming hypochondriacs, that something might be wrong with us mentally, or that the symptoms are masking something far more severe.
That was what it felt like to be Nicole Stouts, as told to Local 12 News. "Heart palpitations, shortness of breath, unbearable migraines; I thought my head was going to explode," she said.
Tired of laboring on from one doctor to the next without any results, Stouts began doing her own research and eventually joined a Facebook group called the Cincy Zebras.
The group takes it name from the idea that zebras might look like horses and sound like horses, but they are something else altogether. Just so, patients with unexplained symptoms are often misdiagnosed with conditions that are similar to their symptoms, but not the same thing.
The Zebras put Stouts in touch with a genetic specialist named Dr. Deriek Neilson, who was able to solve the mystery and diagnosed her with Elhers-Danlos syndrome.
"This is a connective tissue disorder which causes weakening of ligaments and tendons, so what we see is joints that are too lose," Neilson told Local 12 News.
The diagnosis was illuminating for Stouts, and she has teamed with other local moms to make the general public aware of the condition, which is genetic in nature and can strike people as either children or adults, according to the Ehlers-Danlos National Foundation.