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Posted By Administration, Tuesday, April 23, 2019

Kelli's Story...

I had an MH reaction when I was 13 years old while getting teeth removed. Thankfully, I was in the hospital. I was told that it would take 15 minutes and then I would wake up in recovery. Instead, I woke up with a bunch of people around me but I couldn't see much. I was completely frozen and unable to move....I couldn't feel my body, couldn't talk, and I was not breathing on my own (a respirator was on my face etc.…). I kept going in and out of consciousness. I finally completely woke up in recovery and I was fine.

My parents were worried because of the length of the surgery which was over two hours and because they were told that I reacted to anesthesia. The hospital sent a letter home with me which stated my symptoms such as jaw and body stiffness. This was in 1983 and back then, that was it. I went on with my life and forgot about the episode up until 2 years ago when I needed surgery. Luckily I have a friend that is a nurse anesthetist and she advised me to contact the anesthesia department where I needed surgery to discuss my previous symptoms. The providers brought me in and interviewed me about my episode. They took all precautions and I was fine in surgery, I was treated like royalty actually. I did a bunch of research on my own, called people, emailed the professionals on MH and the RYR1 genetic mutation and I was introduced to a doctor at CHOP in Philadelphia. She interviewed me and got a complete history on me about my health and my heat related issues that I have had all of my life - I am relieved to know that I am not a baby and that I really do get hotter than others. She ordered the blood test and it came back positive for not one, but two RYR1 gene mutations; one that was likely pathogenic and one that was uncertain. I was actually surprised and relieved at the same time.....everything makes sense now; all my symptoms such as heat intolerance, not keeping up during exercise, and breathing problems when it is humid. I am happy that I was able to test positive with the blood test.

As told by Kelli

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

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