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Laura Seil Ruszczyk: We need to raise awareness for a common, but rarely known condition

When you have a medical diagnosis that is not well-known and has fewer doctors interested in it than other diseases, you might feel like a science experiment.

Can you imagine going into a doctor’s office and being told by one of the top cardiologists in the area that you are not sick enough to treat? Or watching nurse after nurse as their eyes bug out when they check your blood pressure, which can go from high to low just by moving positions?

When you mention dysautonomia to many medical personnel, they ask you to spell it because they have no idea what it is.

Can you imagine having to travel 200 miles to receive a full autonomic nervous system evaluation because even though you live in the second-largest city in your state with a huge university and teaching medical campus, there is no autonomic center?

Or traveling 300 miles each way to your cardiologist for the same reason? After he implants a pacemaker to treat bradycardia, you realize the local representative is inept, so now you must travel to the cardiologist whenever you need setting changes.

I couldn’t imagine any of these things until I entered the world of dysautonomia. Dysautonomia is an umbrella term used to describe medical conditions that cause a deregulation of the autonomic nervous system. The ANS controls such body functions as heart rate, blood pressure, temperature regulation, digestion and breathing. When this system malfunctions, things become unpredictable.

Hopefully, more medical professionals will become aware of autonomic issues. Then patients won’t need to suffer until properly diagnosed. Unfortunately for many, it takes years for a diagnosis and then trial and error to find a treatment plan. There is no cure for dysautonomia, and one form, multiple system atrophy, is fatal.

I am fortunate; my internist believed the two pages of symptoms I presented him in the fall of 2010. He and his partner worked to decipher my medical puzzle. Seven months later, I traveled to University Hospital at Case Western in Cleveland for extensive testing. This was the beginning of some renewed health.

My internist now manages my case along with my cardiologist. I am fortunate to have a solid medical team, but many throughout the world are not as fortunate.

Dysautonomia International is trying to change this. Formed in 2012 by patients, caregivers, physicians and researchers, this nonprofit organization works to provide education, information, support and research funding for autonomic issues.

In July, I had the opportunity to travel to Washington, D.C., to attend Dysautonomia International’s third annual conference. Cardiologist Dr. Blair Grubb of the University of Toledo Medical Center was honored as physician of the year. I was humbled to read my nomination of him in front of 450 people who share this diagnosis, along with top-notch physicians from throughout the world.

October is Dysautonomia Awareness Month. At 9:45 p.m. on Thursday, we will stand together at Prospect Point in Niagara Falls State Park to view the falls. Dysautonomia International has arranged for the American and Canadian falls to be lit in turquoise, the awareness color of this disorder. It should be an amazing sight. Please consider joining us to enjoy this natural wonder and bring awareness to a disorder that affects 70 million people worldwide.