Meet Our Ambassadors of Hope

In 2011, I started college at the University of Pittsburgh at Bradford for a B.S. in Computer Information Systems & Technology and a minor in Digital Graphic Design. I was very active on campus. I was the President of the Pride Alliance and very involved with events surrounding that organization. I was also an orientation counselor for the freshmen orientation program at the beginning of a couple of years.

In 2014, my life turned upside down at the age of 21. I had been having strange leg weakness, but thought it was due to the weight I gained; it quickly got worse. One night, I felt like I could not breathe and I rushed myself to the emergency room. A CT scan revealed residual thymus tissue, but I was told it was nothing to worry about. They diagnosed the incident as a mild asthma attack. When my PCP received my CT scan, she put all of the symptoms together and told me I have Myasthenia Gravis. She probably saved my life by recognizing it so early and getting me to the right doctors, however, it took me about a year to get an actual diagnosis from a neurologist. On March 16th, 2015, I officially became an MG patient, a day I now celebrate as the beginning of my new life with MG. The only problem was that now, I had a rare disease few understood while also being a college student. My college experience was about to significantly change.

During my time trying to get a diagnosis, I quickly became unable to participate in much at college. I lived on campus and used a mobility scooter to get around. I had barely enough energy to eat, make it to class, and run a club meeting once a week. I was sleeping fifteen hours a day. I had to withdraw from five out of the eight classes I took that year. I also had to quit my work study position in the IT department. Essentially this meant withdrawing from the life I had created for myself at college.

I lost a lot of friends due to not being able to socialize and some “friends” just left when they realized I would never get better. What I did not expect though, were the friends I gained after my diagnosis. I found support groups on Facebook and made friends from around the world. They’re some of the best people I could ever have the pleasure of knowing and I am blessed to have them in my life.

I am 25 years old now and I am still in college part time. I’m looking forward to graduating in December after almost eight years. I’m still President of the Pride Alliance and I serve on a few committees for diversity now. I still use a mobility scooter and a cane to get around, which I haven’t fully gotten used to. I have made the best of it though. Myasthenia Gravis has stolen so much from me, but it has given me as much as it has taken. From new friends to a new appreciation for the little things in life, MG has given me a new life and a new attitude. I am determined to not let this disease stop me, even if it has changed me.

Through my own experiences, I have come to realize how little there is for college students like me on campus in the way of understanding and support, albeit unintentional. And I don’t want others to go through those same things thinking they are all alone in those experiences so I am using my voice to speak up and speak out and hopefully create a more understanding and accepting future for college students like myself facing Myasthenia Gravis. I want to help other college students with MG navigate college life. I personally live with eight chronic illnesses and trying to navigate college life while trying to keep those eight illnesses in check, has not been an easy task. I hope that my experiences in college can help other students feel empowered to continue or start their education. I also hope that others can learn from my experiences and create change on their campus. 

One of the ways I believe positive change could occur on colleges and universities campus is by offering more events or speakers on disabilities. On our campus we often have mental health speakers, but we rarely have a speaker who talks about physical disabilities. I want students, faculty, and staff to learn how to be more inclusive of disabled people. In my experience, people do not typically think about disabled people and the possible limitations they may have. It is an honest mistake if the person themselves do not have physical limitations.

One such instance that comes to mind was an alumni reception that was being planned for my club. The planners who chose the event location did not think about my limitations and chose a venue that had many stairs. It was an honest mistake, but there was no way I was going to make it up those stairs. Luckily, we caught it in time and were able to be moved to the downstairs room. It all worked out in the end, but it goes to show that oftentimes people do not think about disabled people. The planners of that reception were genuinely sorry and we had a conversation about it. I like to think I taught them something about people with disabilities and I am happy to report that they kept this in mind the following year. It is not just about me, but about everyone. I may be the only person with physical limitations they know about, but there are plenty of people in similar situations. I want people and society in general to consider the fact that not everyone is able-bodied. 

Humor and laughter has gotten me through some very difficult times. If I do not laugh, I would cry and what fun is that? I have a quote from a friend that just makes me smile even when I am feeling down. It reminds me that I have a supportive friend, who is always there when I need her, even if she is not always able to relate to my struggles. It also reminds me that no matter what I have going on, I have to keep going. So, I leave you with the quote, “Ya just gotta keep swimming with the fins ya got.”