When the lightbulb dims. . .

This week is Mitochondrial Disease Awareness week. Even though the awareness week is only seven days, Mitochondrial Disease is something me and many others with this devastating disease think about and deal with on a daily basis. Every person with this disease is impacted differently but I want to paint a picture for you of what my life is like with Mito.

Imagine walking outside and getting progressively more and more tired until you just have to sit down to rest in order to regain your energy. While this can be frustrating, I am lucky that it only takes about a 30 second rest to regain my energy. 

Imagine having to look at the ground constantly for uneven surfaces because you know there can be tripping hazards and your vision is impaired so you have to be extra careful. This has become second nature for me and the people who I am with often will warn me of something coming up that I may not see. 

Imagine answering the phone at work and the person on the other end can't understand you. You try to do everything to fix your speech but eventually they get frustrated and ask to be transferred to somebody else. This happened to me this past week and it was very frustrating because I knew the answer to their question but the person asked to be transferred to somebody else because they could not understand my speech. My speech impairment is probably the aspect of my disability that bothers me the most because I want people to understand me and what I have to say but sometimes they just can't or don't have the patience to try. 

Imagine standing talking to somebody and all the sudden falling backwards with almost no warning from your body that you are falling. This happens to me every once in a while and it is quite scary. 

Despite these struggles, I am able to live a fairly "normal" life as I have a full time job and live independently. However, my disability has inadvertently created social challenges as it has been difficult to make friends in the place I currently live due to my disability. This can sometimes make the evenings and weekends quite lonely. 

Unfortunately, everybody with Mitochondrial Disease cannot live a full life as this can be a terminal disease. However, the UMDF Symposium in June gave me and a lot of other patients and their families hope that one day there will be a cure. 

You have the energy. . .WE need the Cure

Written by
Sydney Breslow


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