Dysautonomia is estimated to affect around 70 million people worldwide, but most people have never heard of it.
“It’s an invisible illness,” said Corey Sukalich, who’s been diagnosed with the disease for seven years and been living with symptoms for close to 20. “It’s difficult for people to understand that I’m very sick because they can’t see that anything’s wrong.”
Dysautonomia is a condition in which the autonomic nervous system doesn’t work properly.
“Some of my symptoms include migraines, pain, overactive sweating, irregular heart rate, fatigue, sleep and digestive issues.”
For Corey, life changed starting in November of 2010, when he started getting debilitating daily migraines that seemed to come out of nowhere. It took a year to get a diagnosis.
“Doctors did a lot of tests and imaging; they didn’t have a diagnosis. It was incredibly frustrating to be spending so much time and money when I wasn’t feeling well,” said Corey. “One doctor told me I needed to try harder. I’ve had other doctors tell me there’s nothing more they could do.”
Corey’s symptoms kept getting worse and he was forced to quit his job.
“It was like my whole world was crumbling around me.”
He was finally diagnosed with dysautonomia toward the end of 2011. Then he found the Dysautonomia Center at Aurora Medical Center in Grafton—and neurologist Rose Dotson, MD, cardiologist Ryan Cooley, MD, and nurse practitioners Mary Yellick and Nicole Wagner.
“From the very first appointment, there was just a dramatic difference. They are incredibly knowledgeable, patient-centered, and they listened to me,” he said. “It’s an incredible support network of specialists – because your primary physician may not know what to do.”
“I once went to the ER with a migraine that wouldn’t go away. Now I have the tools to deal with those symptoms on my own.”
There’s no cure for dysautonomia, so the main focus is on managing Corey’s symptoms. In the past year, he has started cutting-edge therapy unavailable to patients at many other clinics. Backed by a diagnosis of Autoimmune Autonomic Neuropathy, Corey now receives IVIg (Intravenous Immunoglobulin) therapy weekly and while it can take time to see improvements, the results show promise.
How you can help
You can help people like Corey by making a gift to support the hospital’s dysautonomia program. You can also help by joining us for Racing Hearts Day, an annual event that raises funds for the Dysautonomia Center. Click here to learn more.
“There’s hope that’s being provided here, and to be a part of it and the evolving research is exciting,” said Corey. “I mean, who wants to live at this diminished level indefinitely? It’s not like you’ve always been this way – you’ve known better and you want to return to it.”
Due to the advocacy of the Dysautonomia Center at Aurora Medical Center Grafton, Corey and other patients like him have a brighter future that they did not know existed even just a year or two ago. Supporting desperately needed research efforts and expanding program offerings will help patients live better lives, lead to treatment options and hopefully lead to a cure.
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