I graduated high school in 2009, and while I was set to attend Ursuline College to live on campus, I ended up not going and doing my college classes online instead. However, I did take college courses in high school as a freshman every summer until my senior year.
Taking college courses during summers was rewarding because I got my first experience being independent, while adjusting to Pompe disease. I struggled to walk at the time and had to do everything differently and by myself.
I believe that what it’s like for someone to have a rare disease and physical limitations while in school is not talked about enough. You are left doing everything on your own unless you have a special care team to help you with certain things. In my summer program, it was the same experience as any regular college student. I had classes, lived in dorms, and had the freedom to come and go as I liked. Personally, I loved it, but I had to adjust to living with a roommate.
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Thankfully, the girls paired with me loved to sleep. Because of this, I had more time to do the things that took me more time, such as showering. The bathroom wasn’t exactly ADA-compliant, so I got up 2 hours earlier so I didn’t have to rush. The most important thing in doing well in college is time management. With all the freedom you have, you have to figure out how to do everything you want to do while getting done everything you have to do. It’s a challenge having a rare disease and being on your own in college.
Many people would prefer that those with rare diseases and physical limitations choose to do online college. Some college campuses don’t like the idea of having students with special needs because they see them as their responsibility, in a way.
In reality, today’s online education is a much better option, but this is just my opinion and what worked for me. I did online college and earned my bachelor’s degree in psychology. I had an opportunity to compare the difference between living on campus and online classes. I think the online classes worked well for me because time was more in my control. I didn’t have the hassle of rushing to class and adjusting to the environment.
College is a great experience, and honestly, if you have the opportunity to go, you definitely should, no matter your situation. Just know your needs. Pompe, whether in a wheelchair or still active, requires special considerations to prevent overwhelming situations that can cause problems. If you’re in college with Pompe, chances are that you were diagnosed with onset in late childhood. Going into adulthood for me was extremely challenging because I stayed sick. My body was struggling just to remain stable.
For anyone with Pompe, we know our biggest struggle is getting around. Doing online college was the best thing for me. While mentioning college, we should take into consideration grade school as well. Everywhere is not accommodating, but, in general, the school system is required to accommodate anyone with special needs, including a rare disease.
Pompe disease does not affect the mental state, and everyone should always take advantage of career and education. It’s a challenge to go forward with career opportunities while having Pompe disease, but it’s worth it, and any rare disease should never stand in the way of completing your education and succeeding in your career choice.
