21 to 87

By Kira, Nuerocardiogenic Syncope, hemiplegic migraines, dysautonomia, undiagnosed connective tissue disease, United States, February 29, 2020

I haven’t been sick my entire life, I was relatively “healthy” until 2018. I suffered from a mini stroke at the age of 21 and my life did a 360°. Instead of battling limbs that needed to be retaught how to work, I was battling autonomic system that had been completely fried. 

I was left unable to regulate my own heat rate, blood pressure and many other things a typical 21 year body should be able to do. I was soon diagnosed with hemiplegic migraines as I was constantly having paralysis on the left side of my body, head to toe, that could last for hours to days. 

A few months later while battling a bout of cyclical vomiting, I tore my esophagus. At the hospital they preformed an endoscopy and I had my first two seizures during the procedure. Several EEGs laters I was diagnosed with non epileptic seizures. During this time, I developed severe syncope as well. I was soon diagnosed with Dysautonomia. Fast forward to today, I'm on more heart meds than the average grandma and I pass out every time I sneeze, yawn, hiccup, and sometimes even swallow. (There’s a lot more but the list would be too long and rather embarrassing) Back in January during my last hospitalization I was diagnosed as the 53 case of swallow syncope world wide. I still can’t drink highly carbonated, super cold or super hot beverages but it’s slowly getting better. 

On top of all of that I’m also currently being worked up for connective tissue disease because my jaw dislocates every time I yawn. 
My life right now is not what I thought it would be at all, but I’m so thankful for every opportunity I have to keep making this world a little brighter. I have an amazing family and service dog in training by my side, as well as an amazing community that helps me feel not so alone in this journey. 

*Find others on RareConnect, the online platform for people affected by rare diseases

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.