Fundraiser to Help Support Dysautonomia Research

My pulse is racing. My palms are sweating. I’m feeling queasy, dizzy and weak. But these sensations are not from excitement or nerves.

This is the way it feels almost all the time when you are a young adult with dysautonomia and chronic fatigue syndrome.

Most people have probably never heard of dysautonomia, an autonomic nervous system disorder also known as POTS (postural orthostatic tachycardia syndrome). I hadn’t heard of it either until, at age 19, I had been sick with it for a year.

Now, from first-hand experience, I know these conditions cause debilitating, life-altering symptoms, including chronic fatigue. And many are affected—including some in our own neighborhood.

That’s why my friend and fellow dysautonomia patient Megan Lauver and I are holding a special event: Bowl Away Chronic Fatigue Syndrome, from 1 p.m. to 4 p.m. on July 9 at the Brunswick bowling alley in Columbia.

We hope to raise awareness about these incapacitating conditions and much-needed funds for the John’s Hopkins Children’s Center Chronic Fatigue Clinic—one of the world’s leading centers for dysautonomia research.

My illness began suddenly, three weeks before I was planning to leave home for freshman orientation at St. Mary’s College of Maryland. At first the doctors were stumped.

They tested me for Lyme disease, brain tumors, leukemia and other scary illnesses for months.

Unfortunately, symptoms of POTS vary so much between patients, and even many in the medical community know little about it.

It was Dr. Peter Rowe at John’s Hopkins who has finally been getting me to function more like the average teenager. At the very least, he reassured me that my symptoms are not “all in my head” like some friends and relatives unkindly suggested.

As Dr. Rowe put it best, “Any adolescent who can’t tolerate going to the mall has to have something wrong.”

I know I am incredibly lucky to see Dr. Rowe, who is a world-leading expert on Chronic Fatigue and POTS. Right from the start, I wanted some way to thank him.

So when Megan suggested co-hosting an awareness event, I was thrilled. In fact, I was excited just to meet a peer who knew how I felt. It’s hard to be social with healthy, energetic teens when you are not even strong enough to sit through a two-hour movie.

As we talked about options for the event, I grew more excited about having a chance to tell the world about our condition, to meet other patients and hopefully ease their journeys through our experiences.

Working on this project, Megan and I have been able to meet many other wonderful young adults who are struggling with these conditions. One father of a fellow Dr. Rowe patient contacted us, saying his daughter “has been having a rough time of it since her diagnosis. … I’m hoping that if she meets you two, she might have an easier time believing that it isn’t always going to be as difficult as it is right now.”

I hope Megan and I really will have a positive influence on other patients like her. But more than that, I hope we can spread our message even further than people who already know they have these illnesses.

We want the world to know more about chronic fatigue and POTS, because you never know when someone near could end up having it, too.