Standing Together is Better Than Standing Alone

This week my parents and I will travel to Alexandria,Virginia to attend the annual United Mitochondrial Disease Foundation Symposium.  I have dealt with Mitochondrial Disease my entire life and I am so excited to meet people who also have this disorder. While I know that most of us will have very different symptoms, I believe that we will feel a connection that is very unique.

Mitochondria are the power houses of the cells. When the mitochondria do not work properly, it can affect various parts of the body including the brain, heart, liver and muscles. Personally, my neurologic system is affected and as a result I have difficulty with my gait, balance, vision and speech. Interestingly, my doctor told me that there are only a few people in the world that have my specific type of Mitochondrial Disease.

I believe that we always feel a strong connection to those we have things in common with. Although I have not met many people in my life who have Mitochondrial Disease, when I do, I feel a strong bond with them, When I was in middle school, I went to physical therapy and met a girl named Rachel, who also had a Mitochondrial Disease. She was one of the sweetest and kindest girls I have ever known and we had so much fun hanging out together. Even though we did not discuss our disorder often, I felt a unique connection with Rachel.  Unfortunately, Rachel lost her battle with Mitochondrial Disease in September. I was shocked and devastated beyond words to find out that Rachel had passed away but she will always hold a special place in my heart.

In November I joined a Facebook group for teens and young adults with Mitochondrial Disease. Since joining this Facebook group, I have realized that there are people with this disorder who have some of the same symptoms as I do. I have also realized that many of the people in this group have some of the same feelings that I have regarding living daily life with this life-changing disease.

In short, it can be very powerful and healthy to meet people who share similar obstacles. If you have a team to fight the obstacles, you can create bridges instead of barriers.

Written by Sydney Breslow 

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