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According to my medical insurance, there is a possibility that one day I will wake up and my Pompe disease will be gone. When did this become the norm or even a reality?

I wish I had confidence that it could in fact happen. Maybe the bout of tests that I have to do every year to prove my disease is still there will somehow read negative. If this is not frustrating enough, it seems to be the norm that my medication takes a little longer every month to get to me. The medical aid takes a little longer every year to be approved and that delay is a saving for the medical insurance company. 

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As I manage my Pompe symptoms, I have started to feel like an inconvenience to everyone else and not the disease itself. I have been living with Pompe disease since birth and yet these big conglomerate medical insurance companies still feel it is necessary to put me through the stress of getting numerous medical tests done every 6 months to prove that I still have the disease. And then they delay approving my medication.

Constantly delaying approval of medication means that I do not receive this life-saving treatment when I am supposed to which results in further pain, muscle breakdown, and other complications that I have to just deal with. Five years down the line, it is still a continuous struggle to get the medication that will allow me to live a fairly “normal” life.  It seems to have become the norm to wait for approvals and jump through hoops. 

Having the disease itself is not the only hard part; finding someone who is willing to face these struggles with you is also hard. I am very fortunate that my partner in life, my wife Tracey Campbell, has my back. Every second week on a Tuesday night we don’t have a date night, we have medication mixing night. Every time I enter a competitive event, I can see the look in her eyes, the look of support and encouragement. And if I am going to walk away defeated or in pain, her support is unwavering.

I once asked her what the hardest thing was living with someone with a rare disease, and she said disappointment. She was referring to the disappointment of not knowing what kind of an athlete I am and not being able to perform at my full potential. But she also said that it’s taught her to be tough, to suck things up and if she is struggling in a race it’s nothing compared to the way I feel, so what is her excuse?

I have become a better athlete and stronger mentally because of the struggles she sees me face daily. Having a rare disease is not the only struggle you, unfortunately, have to face, finding that person who will face it with you is also a big part of the struggle. But when you do, it definitely makes life a little easier facing it together. It might sound doom and gloom but once I refocused my goals and looked at the bigger picture I realized how many people I could help. 

I proved even to myself that life does not stop with my Pompe, and it was time to help others. So if I can influence just one person to realize that they can make a difference in their lives by showing the world a disease will slow us down but never stop us. Never in my life did I think I would influence the people I have, rare or not rare, to have an impact on others to just be a better version of themselves. 

I wholeheartedly try to not let the disease become the norm. Perhaps one day the medical insurance companies will be right and my Pompe will miraculously disappear. But until then, I need to keep fighting and finding ways to influence others to be better versions of themselves.