You have a rare disease, and you now have to make a choice. Will this disease define who you are or will you yourself define who you are?  

After 10 years of searching, going from specialist to specialist, I was finally diagnosed with Pompe disease. I learned it was a very rare genetic disease that results in the body’s inability to break down glycogen into glucose to fuel the body. As a result, my body tears apart muscle to use as fuel, which leads to many other issues.

When I was finally diagnosed with Pompe, my initial thought was, “Is this it?” How am I going to live a normal life and do what I love? The truth is, I won’t. I won’t live a normal life, but that does not mean I cannot live my best life.  


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My dream was always to become a professional athlete. I had worked so hard for so many years and now my dream, my goal, my drive in life had been taken away from me. Living a ”rare disease” life throws some curveballs, but if there is one thing I would like others to take away from reading this article is that you don’t have to let it take you down; you don’t have to let it stop you from doing what you love or following your passion. 

It may at some point mean reassessing and shifting your focus on a different set of goals or ambitions. It may mean at one point your perspective will have to change at how you approach certain everyday things that others do not even need to consider. Learning to shift your perspective could be the biggest saving grace for everyone, with or without a rare disease.

I completely shifted my perspective from trying to be a top competitor to trying to just live an active lifestyle. With Pomp,e I have learned that doing some small form of exercise every day, even just 30 minutes, has a huge benefit.  Keeping the body moving is not only good for the breakdown of excessive build-up of glycogen in my body but also great for the mind.

Surrounding myself with like-minded people that believe in living an active healthy lifestyle was a game-changer. The winning formula for me: Surround yourself with positive people who believe in you, understand your limitations, and celebrate physical and mental victories.

We all have our limitations but adding exercise routines into your daily life will change you by blending your physical and mental health into a positive and potent force. The roadblocks we encounter physically and mentally are often ones that we set up ourselves. 

Read more about the diagnosis of Pompe disease

Walking laps in a pool, walking your dog, swimming, riding a bike . . . any physical movement for 30 minutes a day has major benefits for your longevity. I have mentioned exercise in my articles before and I cannot mention it enough, the mere fact of just being outside putting your feet in the ocean, feeling the wind in your hair, and the sun on your face all have huge benefits to you. 

I am a coach and owner of a coaching academy, Aspire Live Fit. We help people who aspire to live a fitter and healthier lifestyle. 

I have coached over 300 athletes and when they learn about my disease and what it entails, they realize very quickly that their limits are the ones they have created for themselves, and almost immediately start crushing barriers and boundaries.

Look after your body. The last thing you need is to put excess strain on it because of bad eating and no exercise. It is so easy to drown in self-pity, but being diagnosed with a rare disease is not a death sentence. Instead, it’s an opportunity to show and inspire others how strong you are, and how they, too, can take control over their disease and live their best life.