column logo

I have glycogen storage disease type II, which is also known as Pompe disease. Although I wouldn’t say my life is hard or depressing, I would say it is challenging. When you have a rare disease, it comes with a rare disease lifestyle. And that’s basically a life surrounded by doctors’ appointments, medicine, and everything medical. I feel like everything I do is focused on Pompe, from my daily routines to going somewhere. And it doesn’t help that I’m such an introvert. I love being alone but that’s not always healthy when you have Pompe because it could lead to depression.

I think I understand why during doctor appointments I am asked about my mental state. “Are you depressed?” “Do you want to harm yourself?” “What do you do for fun?” are a few questions I have been asked. 

I’m no doctor but I can assure you if you don’t find peace, happiness, passion, and excitement in your life, a rare disease will eat you alive. Our reality can sometimes be overwhelming and that’s why I like to venture away from it sometimes by watching movies and reading books. I’ve seen that many people with Pompe disease cope better with the lifestyle by having friendships with others that are going through the same thing they’re going through, that also have Pompe or something similar. I need that too.


Continue Reading

My friends with similar lifestyles are most definitely the reason I keep going and never give up on myself, but movies, books, and music is my medicine. Every now and then I have to lose myself in a book or movie. Our imagination is the most unique thing about us. It’s something I have to rely on. I don’t have to think about anything medical once I open a book and start reading. My mind is in a completely different life, sometimes it’s a better life, and sometimes it’s worse. Either way, I love it because I get to feel emotions other than constant worry and overthinking. 

Read about HCP resources for Pompe

My absolute favorite genres to read are mystery and romance. Mystery because I love being left thinking about trying to solve something. Romance because I just love a good love story. Romance is probably my favorite because in a way it puts me more into a fantasy state. And it’s something that’s not a part of my life. Love and relationships in reality are nothing like in romance novels. I think that’s kind of the point of writing them. My favorite movies to watch are comedy and romance, but mostly any kind of movie.

As we all heard before, laughter is the best medicine. I love to laugh and I love being around people that make me laugh. Laughter reduces the stress I get from Pompe. Oh, and of course, my love for music. Something to feed any mood I’ll have. I definitely don’t have a favorite music genre or artist; I’m very diverse with music. I can go from hip-hop to rock with no issue. 

When I was diagnosed with Pompe disease at age 12, I didn’t care about learning to cope with it because I was still learning about it and that’s how it will be when you’re dealing with something new. Learning your body is the main focus, but as years go by and things become more routine, you have to find some balance in your life and not let your condition take over your whole life.

Find your interest. You know what you like. Even though my thing is movies and books I still find joy in little things like shopping and makeup—the girly things as I would say, but not every female is into that. But don’t let your entire life be about your health, because that’s a boring life.

Another important thing to do is to keep normalcy in your life, and this is an important one that I don’t even do as much as I should, and that’s to keep a social life. The best people to be around are the ones that will make you forget about your rare disease.