Emily's Story


Hi. My name is Emily Wilkinson. I am 17 years old. I was diagnosed with POTS in August 2015 and this is my story.

My mom also has POTS. She began getting sick when I was 10. After many years of waiting, she was diagnosed in October 2013.

I was as healthy as I could be most of my life. I was taking piano lessons, playing soccer, hanging out with friends and going to school with no problems. But since I was very little, I always noticed that I could fall down very easily and was feeling weak sometimes. I also noticed that when I stood up, my legs and arms would turn purple often. I never really thought anything of it. I always thought that it was just me.

I seemed very healthy up until the age of 9. When I was 9, I started getting many stomach problems. I was feeling sick all of the time. It only got worse as I got older. When I was in grade 7, I noticed that I would be getting very dizzy and shaky often. My parents began taking me to doctors appointments but the doctors always thought that it was just my age and that nothing was wrong. At 13, I was throwing up a few times a month for about a year. The doctors could not figure out why though. I had to start a lot of medication to control it. After trial and error, it seemed to work and my stomach problems were as controlled as it was going to get for a few years. The only other issues to deal with were the dizziness and shaking. At that point, I began to start getting a lot of full body tremors out of nowhere. After many tests, the doctors still believed that I was probably just a dizzy broadand I would be fine. They also thought that it would never go into what my Mom had. At age 14, I had my first episode of near fainting. They began to get more and more often but school and every day life was still manageable. When I was 15, life started to get harder and harder. The normal everyday things were beginning to become almost impossible to do. I started to notice that standing for more than a minute became so difficult. My doctor ordered a 48 hour holter monitor for me. When the results came back, we found out that it caught my heart rate going up to 177 bpm. At that point, I knew that I most likely had POTS. A few months later, we were at my sisters dance competition and out of nowhere, I collapsed on the floor. I went into seizure-like activity because of my noise sensitivity. A few weeks later, I had to start a home program for school because I was barely able to sit through an hour class everyday and was missing school a few times a week. At 16, I was diagnosed with POTS by a tilt table test.

The last year or so has been one of the hardest years of my life. I have not been able to go to school, hang out with friends, be my normal happy self and just be a normal teenager. I was having a really difficult time with it. I was always afraid of what could happen and what has happened. All I wanted to be was a normal teenager. It was made even worse when I was ditched by friends because I was never able to be around and they didnt understand. With the help from doctors and counselling, in the last few months, I have been improving quite a bit. I have been able to go hang out with friends, go back to school and have been starting to feel normal again. I am now noticing my normal, every day, happy self. One of my favourite things to do is to make a difference in the world. So now that I have found DYNA, I am doing exactly that. My mom always tells me is that we are increasing awareness one person at a time. My doctors, family and some friends have been so supportive through all of this. I would like to thank them for all of that support. It really means a lot. Dysautonomia patients and their families are truly in this fight together on a daily basis and we will continue this fight.