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  • Writer's pictureGrace Robinson

Life With Mitochondrial Disease

What is Mitochondrial Disease?

Mitochondrial Disease is a genetic and progressive disease that prevents the mitochondria from working properly, eventually causing cell death and organ failure. Mitochondria are found in every cell in the body (with the exception of red blood cells) and are responsible for creating 90% of the energy needed to sustain life. The organ systems that are most greatly affected are the organs that require the most energy; such as the brain, heart, lungs, and muscles. Some types of mitochondrial diseases are inherited while others are caused by a spontaneous mutation. Although mitochondrial disease mostly affects children, the onset can occur at any time and everyone is affected differently, often making it difficult to diagnose.

My Life with Mitochondrial Disease

I have been sick for my entire life but wasn’t diagnosed with mitochondrial disease until I was 20 years old. When I was younger, I was only mildly ill. I didn’t realize a lot of the symptoms I was experiencing weren’t normal so I didn’t bring them up to the doctor. We chalked a lot of things up to being “normal kid problems” when they were in fact much more serious than we believed. I started to become sick to the point where we thought something might be wrong when I was 14, and I have continued to get worse ever since. As I grew older, I started to experience more symptoms, was prescribed more medications, and required more surgeries and hospital admissions. Unfortunately, that is the reality of having a progressive disease; the older you grow, the sicker you become.

In 2015, I was diagnosed with mitochondrial disease after spending almost 3 months admitted to the hospital due to metabolic crisis and brain lesions causing an array of very serious symptoms. I was told that I would always be sick and will continue to get worse. I was told that there was no effective treatment, let alone a cure. In a blink of an eye, I went from being a college student who was able to go out with friends and take long runs to someone who depends on a wheelchair and has a hard time holding a pen.

My life suddenly came to a halt when I was diagnosed with mitochondrial disease. I had lost the ability to perform a lot of the tasks I had always been able to do- things that I needed to be able to do. Because of this, I had to adjust the plan I had for my future and do what works for me in the moment.

Mitochondrial Disease is and always will be a huge part of my life because there is no escaping it no matter how hard I try. I am very symptomatic every day and have had to adjust to a new normal. I now receive my nutrition through a tube in my intestines and rely on a wheelchair as I can no longer walk. I am constantly exhausted, nauseous, and in pain, all of which greatly affect my daily activity. Some other common symptoms of mitochondrial disease that I experience are:

· Muscle weakness/ loss of muscle coordination

· Seizures

· Vision problems

· Neurological issues

· Hypoglycemia

· Heart issues/ fainting

· Liver problems

· Gastrointestinal disorders

· Respiratory disorders

· Increased risk of infection

· Thyroid/ adrenal dysfunction

· Bladder dysfunction

· Dysfunction of the autonomic nervous system

· Neuropsychological changes (confusion, disorientation, memory loss)

· Sleep disorders

It is difficult having a disease that is so rare and complex. Only 1 in 5,000 people have a mitochondrial disorder so doctors often don’t know what to do with me. This means that I slip through the cracks a lot. I have a few doctors that always come through for me, and if it wasn’t for them, I wouldn’t be alive today. At this point in time, my life mostly consists of trying to manage my health. It’s not the ideal situation but I don’t have any control over it. My body does what it wants and all I can do is put out the fires as they pop up.

I could go on about my life with mitochondrial disease, but instead, I will leave you with some pictures of the good and bad moments from this year. This is what mitochondrial disease looks like.

To learn more about Mitochondrial Disease, visit UMDF

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