One of our greatest passions here at the Myasthenia Gravis Hope Foundation, is fostering a safe and nurturing relationship with patients, caregivers and loved ones as they experience Myasthenia Gravis in their own contexts and within their unique needs. We are here to walk with you through every step of the way, every day, to encourage you, educate you and advocate for you and one of the exciting ways we can do that for you here is to connect you with fellow Myasthenia Gravis leaders who are using their journey to speak to others on a similar path.
It is our hope and prayer that our ambassadors and our team continually offer you a sense of compassion, dignity and strength through everything that we do.
So follow along with our ambassadors and find love and hope through their stories as we fight Myasthenia Gravis, together.
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.”
Follow Tyler's journey as he shares his successes and challenges to bring hope, help and awareness to those who are in college, desire to go to college or are facing similar struggles.
August 2017 was our first “ officially” fight to find out what was going on with our beautiful little girl. But I’ll start from the beginning. Chloe was born October 2013, it was a rough pregnancy that involved bed rest due to being high risk and bleeding. After we had her we were so blessed for this little girl. She was the second at the time and I couldn’t breastfeed my first so feeding her was really all I knew. She was hard to keep awake while feeding and was often referred to as our “lazy baby” by her doctors, and were told by her doctors not to worry even though feeding her took FOREVER! I thought they knew better and carried on. She was hitting milestones and super smart, so we continued on just thinking she was just lazy with playing, eating and really just being her. I always brought it up at every appoiment that I went to and saw nutritionist after nutritionist with the same song and dance, “shes picky,” “she’ll grow out of it keep trying!” They often said. I tried not to judge because every child is different ( right? ) and looking at our older son he must of just been wild and a nutty boy! ❤
Fast forwarding to 2 years old, we thought, lets meet little girlfriends get exercise to push her more so she wasn’t just laying around all the time. So I put her in those tiny ballet classes. After that class she couldn’t walk to the car and slept the whole way home but was so happy she did something! That night she started turning blue and couldn’t breathe…. I rushed her to the local ER and thought man she really must of caught a horrible bug, I mean, what else could it be?!
Well the ER in San Tan Valley, Arizona told us she had Pneumonia and gave us medication and sent us on our way. The next day I didn’t feel right about her diagnosis from the night before so I brought her to her primary pediatrician, who sent us for another xray and within a 6 hour span her Pneumonia was 100% gone! I thought this must have been a strange fluke and it was going to be ok. Beside the point I went nutty and never wanted her to get sick AGAIN! I was going to do anything and everything to protect her! I ultimately lost myself in germaphobia and hand sanitizer became my best friend.
Fast forward to August of 2017, we thought she was older and stronger so maybe she could do another little ballet class. She constantly begged us to dance, that’s all she wanted to do! So we signed her up and then it all happened again! She stopped breathing again that night and again I rushed her to an ER, a different ER this time, even though it was a bit farther from we lived. The commute was absolutely terrifying, I had the windows down yelling at her to stay awake as she faded in and out of consciousness. Once we arrived, we were rushed into a treatment room and at by this time shes doing much better, vital signs were stabilizing and the medical personnel began to run tests to see if she’s sick. They couldn’t find anything but I fought and I fought like never before! How can this just be a “lazy” 3 year old? Is that even possible? We were so blessed to have such a great ER doctor. He wasn’t giving up either or maybe I scared him I’ll take it either way! He said we can’t help her here so we will have to send you to a eediatrics hospital in Phoenix. I remember thinking “great, maybe he doesn’t want to help and are just going to tell me the same thing! I’m wasting my time!” I called my husband, Dustin, who was watching our 5 year old and our newborn son who I was still feeding. Dustin said “no we need to fight, lets do it we will make it work!” I agreed to the transport to the pediatrics hospital.
Once we arrived they ran every test in a 4 day span and ruled everything from diabetes to thyroid issues. It wasn’t until the 4th and final day when the doctor over seeing our daughter thought maybe it could be MG. They said she’s doing better lets just send you home and set up an EMG, no rush we will get to it. That same night we where back in the ER with her not breathing. They sent us back to Phoenix and did the EMG that day, which came back positive for CMS due to all her symptom’s since birth. Antibodies came back negative, and her genetic testing came back negative. They put her on Mestinon and she was a little girl with a smile and she ate for more than 2 minutes! She felt good!!
We had follow ups with her Neurologist and sometimes he was great and other times he believed she didn’t have this because she could walk “sometimes.” It was a huge roller coaster! She did stop breathing again in this 4 month span and helped her rest and get her body back to her “normal”. The Arizona heat was literally killing her, I couldn’t stand her Neurologist, it was way too hot and I need to fix her and help her any way we knew how! So off to Oregon we went in February of 2018! After searching for the best Neurologist or at least someone willing to help her we landed at Shriners Pediatrics in Portland! Her Neurologist is guiding us and helping us with sleep studies, feeding specialist, pulmonologists and so much more! We have such a long road ahead but I do believe God moved us her to help us thrive! I couldn’t do it without him and looking forward to sleeping one day 😉 She is my heart and snowflake warrior! Thank you all for taking the time to read some of our story! Here we go!