Kerry's Story.


If I had to pinpoint a year when my life changed, it was 2010. Up until that point my life had been relatively routine except for random occurrences of symptoms that never added up to any answers. I was 20 years old living in a big new city when I collapsed on the floor of my Aunt's kitchen and woke up screaming.

Thrust into a world entirely over my head at the time, I began to see a series of doctors. The most debilitating sympton was uncontrollably high heart rates caused by IST that would cause me to pass out. Medications came (failed) and went. Out of desperation, an ablation was scheduled to help lower my heart rate. It was successful for about two years, during which time worsening connective tissue problems led to a diagnosis of EDS.

When my IST symptoms (plus some new ones) returned, I had two more ablations before being referred to a POTS specialist. He helped me sort out what was IST, what was POTS and how EDS was woven into all of it.

In 2015 after a year of data from my LINQ monitor, I had a pacemaker implanted to stop syncope caused by sudden rate drops. Fainting can still happen via high heart rates and when my BP drops before my heart rate does, but I have yet to acquire any new head injuries.

I'm currently being worked up by a few doctors to put together a plan of attack for my newly discovered Chiari Malformation. Yet another condition linked to what I already have. I've worked very hard the last year and a half to exercise and condition myself. It has been of great help for POTS and EDS and I don't plan on letting Chiari end my progress if I can help it.

Everything isn't without ups and downs. There are days-sometimes weeks of mental and physical setbacks. The struggles will always be there, just like with any chronic illness, but my motivation to help myself crawl out of this pit has never been higher. Yes, chronic illness is a part of me and takes up a great deal of my time, but in no way will I let it become the entirety of who I am.

- Kerry