Remember when we were younger and we were taught as kids how important it was to eat healthily and exercise? Grade school had health classes and we were taught as children the importance of the main food groups. And we had gymnastics, which I personally didn’t like because I couldn’t keep up with the other kids, but when you’re a kid, exercise was fun. Just being able to run and play around was fun. As we become adults our bodies change in many ways. 

We all know the importance of eating healthy but let’s be honest, if we looked and felt healthy, we ate whatever we wanted to eat. But I am here to tell you from experience and I’m pretty sure a lot of people can agree, there is a major effect on your body when you eat well.

Diet should be a major focus for physicians, especially those treating Pompe and other rare diseases.  Although I had a nutritionist, I was told that because I was so thin and underweight, I could eat whatever I wanted. To me, that meant I could choose junk food over a healthy meal. I could eat all the potato chips, ice cream, and donuts I wanted because it was calories that I needed. I was told that as long as I was eating something regularly that was a good thing. 


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When you don’t come from a family of healthy eating habits, you can unknowingly pick up some bad habits. And that’s exactly what I did, I ate anything I wanted and my health didn’t get any better. As a matter of fact, it got worse. 

The great thing about food is that it wasn’t made to just satisfy our hunger, it keeps our body moving and healing. When you have a rare disease like Pompe, your diet and exercise play a big part in your health. I didn’t learn this until later in life. My junk food habit and drinking soda over water were doing so much harm to my body. I was underweight, and my iron, potassium, and vitamin D were incredibly low.

I was once hospitalized for severe dehydration and my digestive system was deficient, in terrible condition. I often wonder if I was told by doctors that my diet was harming my body, would I 

have changed my ways. After all, experience is the best teacher. But I decided to start eating healthier a few years ago. It didn’t just start with buying healthy food, I had to do the research first. When I looked closer at my state of health, I learned my body was lacking the kind of foods that would help my overall health and well-being. And changing my diet created a major shift in my health. 

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A rare disease such as Pompe causes muscle weakness, which means the lack of strength and constant fatigue can be overwhelming at times. Nutrition can stabilize those factors. I changed the food I was eating and it changed my life. I’ve never felt this healthy before and when I go to the doctor, my metrics and other indicators have improved. I’m healthier.

Nutrition and exercise have to be taken more seriously by people with rare diseases. The attention is focused too much on medicine when food and exercise are a big part of the treatment course. When you don’t come from a healthy lifestyle, you have to be taught what a healthy lifestyle is and how to adhere to it. A physician has the responsibility to inform their patients about their diet but the patient has the responsibility to follow through on their own.

An unhealthy body can also interfere with mental and emotional health. It’s obvious that we feel better when we look better but that’s not always the case; we feel better when we actually feel better. Being comfortable is not always easy when you have a rare disease. Feeling healthy and comfortable is a good day for rare disease patients. Feeling strong with no pain is a good day.

I stopped eating a lot of stuff that I still love but I decided that I need to take care of my body. And ever since I started eating the right kind of foods and doing stretches with my legs and arms, I have felt so much better.