THIS IS MY STORY . . .

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Jul 25, 2018
Hey friends,   I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went!   Been trying to pull all my thoughts together on what we learned at the appointment.   After updating my mito dr. on all that’s happened since I last saw him, he is thinking more and more that the POLG gene variant that was found in my whole exome sequencing is the likely culprit that’s causing my mitochondrial DNA depletion.   According to the NIH genetic reference site, POLG “is a DNA polymerase, which is a type of [...]
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Jun 1, 2017
Hello friends,   My family and I got back from CA on Sunday.  It was a super quick trip, but we were able to spend a lot of time together which was so special. :)   Our first two evenings there, I suddenly had terrible nausea and severe muscle weakness to the point that I couldn't lift my arms or even get up to brush my teeth.  All I could do was lay on the hotel bed.  It was even so hard to hold my phone up. :(  I couldn't help crying because it was scary.  This didn't happen at all when my parents and I traveled to San Diego in January.  I hate that I'm getting [...]
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May 18, 2017
Hello friends,   Last week, I had a follow-up with my neurologist.  I wasn't expecting it, but she had a serious talk with me and my mom...  She told me that my mitochondrial disease is progressing, and because there's no cure and no good treatments (except antioxidants, symptom management, etc.), she said there's not much we can do except "keep me comfortable."  I know I've been getting worse medically....I wasn't this bad 2 years ago. :(  But to hear my doctor tell me this was really hard, and I'm still processing all of what she said.  No 24 year old should have to hear [...]
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Feb 7, 2017
Hello friends,   This is super long, so feel free to take a break and come back to this if need be... ;)  I'm sorry it's been so long since I've done a proper update.  Too much has happened. :O  Thank you so much for all your prayers, cards, and emails!  You fill my life with joy time and again.   Mitochondrial Medicine--- On January 17, my parents and I saw my mitochondrial specialist in San Diego.  I have now seen him in clinic 5 times.  At this appointment, he looked over all of my muscle biopsy results (the electron transport chain enzyme [...]
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