I first got sick in April of 1999, about four months after I turned 7. My parents took me to Egleston Children’s Healthcare Center (Now CHOA at Egleston), where I spent about a week in the psych ward for observation. I declined so rapidly that they decided to admit me by the end of the week (I went from walking into the ward to having to be pulled in a wagon within the span of five days).
Over the next four weeks, I underwent numerous tests. At one point during my stay, I hit rock bottom. I could not walk, talk, or even swallow. My mom asked everyone to do the only thing they could do: Pray. My Church family prayed; my entire extended family prayed; my friends prayed; even people whom I didn't know (and some who I still don't know) prayed. And, miraculously, I began to turn around.
The doctors were still stumped as to what I had, because my symptoms were not “textbook” for ANY disease. The one that it looked most like, though, was Pediatric Auto-immune Neurological Disorder Associated with Strep (P.A.N.D.A.S); except they had not detected any strep titers in my system. They kept checking until they finally detected them, then they discharged me under the P.A.N.D.A.S. diagnosis. Over the years, I was in and out of the hospital numerous times due to symptom flare-ups.
In September of 2006, four months before I turned 15, mom and I were getting ready to go up to Duke to pursue rituximab as treatment. In preparation, I had a full blood panel drawn to determine whether it really was an auto-immune disease that we were dealing with. Since I had just had a major symptom flare-up, it was expected that my antibodies would be through the roof; instead, they came back dangerously low. That was when they realized that it was not auto-immune, and that further testing would be needed.
In April of 2007, eight years after my initial hospitalization, I had a muscle biopsy taken from my left leg to determine whether I had Mitochondrial Disease (Mito). The results came back that August: I did indeed have Mito.
It’s hard to say because I was under the P.A.N.D.A.S. diagnosis for so long, but the more I think about it, the more I think that I have had Mito since I was 7. The fact that my symptoms did not fit into a “textbook” case of ANY disease was a major red flag that we did not see.
Many people who have early-onset (before age 10) Mito do not live past their teens. I almost became one of those “many” back when I was 7. I celebrated by 25th birthday on December 10th, 2016
For more info on the type of mito that I have, go to: http://www.umdf.org/types/ and scroll down to Leigh's disease or syndrome (it should already be expanded)
For more info on mito in general, go to: http://www.umdf.org