"Mito Warriors"

As we traveled home yesterday from Mitochondrial Medicine 2017, I sat in the car and reflected about my time at the conference. The first thing I thought was, "WOW... I feel rejuvenated and hopeful about not only my future but the future of all of the affected people that I met."

It was so interesting to see the range in which the disease affects people. Some of those affected look totally fine on the outside but have debilitating affects from the disease, such as "mito crashes." Others are unable to walk, talk or eat independently. I think the stories that broke my heart the most were those where the individual was completely fine for the first years of their life and then something triggered the disease. Can you imagine going from playing sports and being able to socialize with friends in the typical manner to not being able to walk without assistance? In short, this is a rare and devastating disease that needs a cure.

My favorite session of the conference was when the teens/ young adults sat in a circle and were able to ask two doctors very candid questions about Mitochondrial Disease. I thought this was a great session because we were able to ask questions that we may not ask in a typical doctor's appointment due to time constraints and the influences of our parents.  I met one of the doctors seven years ago at the Arizona conference and every time I see her I feel such a connection. 

One thing that I learned at the conference is that sometimes people with Mitochondrial disease are judged by others for needing to rest or take a day off of school because they look completely"normal." This further validated my belief that you should not judge a book by it's cover because you never know what is going on inside. 

Finally, after talking to many doctors and listening to many lectures I learned that there is a lot of hope for Mitochondrial Disease research through clinical trials and other avenues. I truly believe that my job now is to spread awareness about Mitochondrial Disease and other rare diseases because even though this disorder affects a smaller number of people, they are still precious lives that we are losing. 

Thank you to the UMDF staff and my new" Mito family" for being so welcoming to my parents and me! You all are truly amazing and gave us so much inspiration throughout the weekend!

Written by Sydney Breslow 

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