Lessons I took from the Hill
When I graduated from McDaniel a semester early, I was excited for my future. I was moving to South Carolina with my now husband, and I would be teaching high school social studies. I didn’t know I would soon have to prepare for another more demanding transition in my life.
Just six months into my first year of teaching, I suffered my first attack where I found I couldn’t move — at all. I went on bed rest for two weeks while test after test by the orthopedic surgeon came back normal, and every blood test showed a picture of health. Yet, I had no relief from debilitating pain and weakness. When the orthopedic surgeon told me we’d exhausted our options, I went to a neurologist.
In November 2021, I tested higher than the doctor had ever seen in a patient before for one test. GAD65, or glutamic acid decarboxylase 65 antibody, is a biomarker for autoimmune central nervous system disorders and non-neurological autoimmune disorders such as type 1 diabetes. GAD65 also tests for a one-in-a-million disease called stiff-person syndrome (SPS). Marked by severe muscle spasms and increasing rigidity, SPS is a progressive and degenerative disease that often leaves patients using mobility aids and receiving frequent infusions.
And I had it. I was one in a million.
Aside from complete devastation, I wondered what would happen next. I had to quit teaching to focus on my health. I couldn’t go out and play with my dogs unassisted, and I spent nearly three consecutive months in the hospital working up a treatment plan.
I learned I would be on multiple medications and infusions for the rest of my life, and at some point, they would stop working. At 23, I was forced to consider that I might not ever have the life I had always envisioned.
Before long, I realized that while this new chapter of my life wasn’t what I had planned, that didn’t mean I couldn’t refocus and move toward advocating for myself and others with this rare disorder. This is where I found my four years at McDaniel had given me so much more than just my degree in History.
McDaniel’s required liberal arts curriculum introduced me to communication classes, psychology lectures, and public speaking seminars that all gave me skills I have found useful in my advocacy. My extracurriculars also introduced me to the concept of a community, which has helped me find my footing as an advocate for myself and others.
Community is necessary for everyone, but that is especially true when someone is diagnosed with a debilitating chronic disease. Finding community in the rare disease world is like finding a needle in a haystack: hard to do but rewarding when accomplished. Advocating together for advancements in treatment and cures is just the first step to building a strong foundation where we can support one another, no matter the disease.
I hope that through my advocacy work, I can help others see that being chronically ill is not the end of their life. My goal has always been to educate, inspire, and mobilize the next generation to be aware of chronic illnesses — the rare and the common — and to realize this happens to everyday people, but that by joining together as a community, we can make a difference.
Alison Lafferty States ’19 earned a B.A. in History from McDaniel. On the Hill, she was a member of Phi Alpha Mu, a Peer Mentor, and a Peer Mentor Advisory Board member. In 2020, she moved to South Carolina with her husband, who is serving in the U.S. Marine Corps. They are expecting their first child in July.