My Untold Story

“Live life to the fullest, and focus on the positive.” – Matt Cameron

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Most people believe that we are put here on this earth to live life as we go. But what if your life was dependent on how you ate or drank to live. Sounds horrible, right? Well that was my life for the first 18 years.  I was born with a metabolic disease called ‘Maple Syrup Urine Disease” also known as MSUD. According to Rare Diseases website, this disease is so rare that only 1 in every 185,000 births have it.  I don’t want to bore you with the medical terminology. In short, human bodies are made up of amino acids. A person with this disease is missing the enzyme needed to break down three of these amino acids.

To receive the right nutrition, I was on a very strict diet that contained no meat and very little dairy products. You are probably asking yourself “where did I get all the protein then?” Well that is where a special formula that I had to drink two or more times a day to get the nutrients I was lacking. Let me tell you it was the most disgusting drink I have ever had. I still can get whiffs and tastes from it even after 12 years of not drinking it. For those of you that are my fellow MSUD friends, you can relate to this. Aside from the eating limitations I had growing up, I lived a normal “healthy” childhood. I had friends, family, went to school, played sports and enjoyed life. However, if a child with this disease got sick it can be very life threaten and scary. Proteins in food were considered toxic and when the levels spiked too high it could cause serious problems such as lethargic, hallucinations, and if not treated even death. I know it sounds scary and it is when you are unfamiliar with the disease, but it can be monitor with the right direction from doctors and dietitians.

If you fast forward to my junior year of high school, I was in and out of the hospital or out on “sick” day from school. Having “sick” day or in the hospital was all due to my levels not regulating like they used to/should. During my final stay at the hospital in the middle of my junior year, my specialist doctor from Riley Hospital for Children, recommended a liver transplant as a possible “cure.” Notice that I put the word cure in quotations. As I had the transplant, I am not 100% cured from this disease. It is a genetic disorder, which means that I still have the DNA of the disease in my body. I am just cured of the symptoms so that I can continue living a life my parents and I wanted.

I always wonder what it would be like if I had not gotten the transplant to see where I would be right now. Would I have completed my bachelor’s degree? Gotten my master’s degree? Lived on my own? Gotten married? Had my two beautiful children? The answer will surprise you. I probably would not be where I am at today and you want to know why I say that. It is because of how I handled my health before my transplant. I had plenty of days where I cheated on my diet, which more than likely caused all my episodes and/or hospital visits. I would most likely still be living at home with my parents in a dead-end job that I would not be able to advance in. So, as I reflect on my life now, I think how lucky and thankful I am of yesterday, today, and tomorrow for this life I am living.

xoxo – Brittany

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