What was your journey to getting a diagnosis like?

Very frustrating! I started passing out when I was 16, but the doctors weren't sure what was going on. I went for a round of heart tests, EKG, EEG, heart monitors, etc. My cardiologist sent me to the University of Toledo Medical Center to get a proper diagnosis at the age of 19. The wonderful Beverly Karabin diagnosed me without even needing a tilt table test! She immediately changed my medication regiment and I started to feel better after that.

What is your biggest struggle with Dysautonomia?

​I'm a senior in college, so just functioning day in and day out is hard sometimes. This is the age where we're supposed to go out, stay up late, and have fun! There are many days where I can't do those things with my friends. I certainly cannot drink alcohol, and staying up late or even having enough energy to go out is sometimes impossible. I've slowed down significantly since my diagnosis, get disability housing at school (basically just a first floor apartment), and have to plan my day so that I don't wear myself out too quickly.

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Is there a Dysautonomia success story you would like to share?

By struggling with my POTS, especially during bad flare ups which I'm currently dealing with now, I'm able to learn a lot about myself and have spent this "down time" getting to know myself, God, and others better. Dysautonomia may take a lot away from me, but it can't take away my faith, hope, and awesome support system! POTS can be psychologically damaging as it's easy to become depressed when your body feels damaged so I give myself one pity day a month where I'm allowed to sit around and feel sorry for myself. Every other day is spent trying to enjoy life and doing what I can.

What are your top three treatments that help you function daily?

Lots and lots of water/salt, medication, compression stockings, and exercise when I can (sorry! I know that's more than 3!)

Who has inspired you most on your journey?

My momma. There was a time where I could barely get off the sofa and couldn't even walk myself to the bathroom. She advocated for me, called doctors, did research, encouraged me, and helped me take this "down time" as a blessing even though it doesn't always feel like that.

What would you like to say to the public at large about your situation and Dysautonomia? 

Dysautonomia is an invisible illness. I may look fine, but I may feel absolutely horrible. I think the biggest thing the public needs to realize is that POTS can be very debilitating and isn't "made up in my head". I've learned that you can't judge a person or their capabilities by how they look and I think that message needs to be shared on a more public level.
 

What advice would you give to a newly diagnosed patient?

First, you need to be an advocate for yourself. If you can't, or don't have enough energy (which was my case) get someone close to you to help you. For me, it was my mom. She called doctors, scheduled appointments, and drove me 8 hours to get a definitive diagnosis. Also, do your own research! Join support groups on Facebook, look up information in medical journals, etc. The more educated you are, the more prepared you'll be for your bad days. Lastly, give yourself lots and lots of grace. You may have to slow down or change some of your lifestyles but you are not dead- you are living and breathing so try to enjoy it instead of focusing on the bad!