Nutrition is an important part of maintaining a healthier lifestyle while living with spinal muscular atrophy (SMA). It isn’t that we have weaker immune systems; it’s the fact that because of our muscles atrophying, we find it harder to fight off sicknesses. The strength isn’t there to cough, or even eat. Meanwhile, it’s pertinent to avoid any foods that weaken the immune system, and it’s also just as important to take supplements that help strengthen the immune system to fight off or prevent sickness altogether. 

Unfortunately, many medical doctors I’ve seen over the years, made it difficult to justify using natural alternatives versus traditional medicine. This is something my mom specifically struggled with in dealing with my doctors. Many times, she was told I didn’t need a multi-vitamin because I should be getting enough in my diet. They also wanted to see the natural progression of the disease. This concerned my mom, however, because it made her feel like her child was being asked to be used as a test object. It made her lose hope in medical doctors, quite honestly. 

Meanwhile, she was struggling with the fact that it was very difficult for me to consume enough nutrients through strictly eating. I wouldn’t eat the average three meals a day. The nature of the disease can often suppress your appetite, or cause exhaustion to chew. The jaw muscles work extremely hard, which in the long run causes more calories to burn. It can be a vicious cycle trying to find the right balance. That’s why my mom strongly believed in supplementing my diet.

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Supplementing was great, and the doctors agreed. But the supplements offered by doctors were loaded with dairy, sugars, and proteins that make it difficult for individuals with SMA to digest. My mom and I had to learn the long and hard way. I experienced many stomach upsets, severe cramps, and excessive amounts of phlegm. Individuals with SMA produce an abnormal amount of phlegm. So, avoiding foods that enhance their production is important. 

Nevertheless, as my mom continued to research more about my condition, she learned that dairy should be avoided with SMA patients and proteins should be plant-based, not animal-based. Our bodies don’t digest animal proteins as easily compared to the average person, and dairy naturally produces more mucus (phlegm). 

Addressing these digestive concerns with doctors often got dismissed. Their thought was this works for our other patients, so it can work for you as well. However, that’s not true. We are rare cases, and in situations like this, we require a sensitive ear to listen to our concerns.

I once had a doctor tell me that I just didn’t like food. The lack of understanding and empathy made me feel humiliated. I had no control over how my body was reacting to these substances. It wasn’t my fault I was afraid to eat. Every time I ate foods containing the above ingredients, I’d feel sick. 

Regardless of what the doctors suggested, my parents switched my supplements over to organic, chemical-free, plant-based, and dairy-free supplements. Thankfully, it has made such a difference, and I’ve been fortunate enough to avoid any type of feeding tubes. 

I’m hoping in the near future more doctors will consider offering other natural alternatives for rare diseases, such as my own. These supplements are expensive, and it would be great if doctors could prescribe these healthier alternatives through insurance. This would help minimize the costly burden on families and provide a more sustainable lifestyle for those fighting against the odds.