Ingrid, a college student living with central nervous system (CNS) vasculitis, shared her story with the Vasculitis Foundation in her own words:
In the fall of 2022, I was in my sophomore year of college. I started feeling terrible the very first week of classes. It was August 27, I was studying and feeling unusually tired. I began feeling worse and had a painful headache when I went with my roommate to the barn. I was not myself. I was talking gibberish to my roommate, my speech was slurred, and my face was drooping on one side. I went to the hospital. They sent me away with a diagnosis of migraines and auras. The next day I rested and slept because I was so exhausted, and that whole week I did not want to go to class because I was worn out. I went home for Labor Day and spent more than eight hours on very little homework because I was confused, disorganized, and did not quite understand what I was doing. My mom was worried about me, but she took me back to school after Labor Day.
Two weeks later, on September 15, my life changed, and a serious set of medical events unfolded. On that morning, I went to get coffee with my roommate before class. I fell to the ground twice at the library when I was walking to the bathroom, and then I fell another time after class. Even though my mom begged me to go to the hospital immediately, I took my statistics test, and I got an A. Later that day, my dad picked me up and took me to the hospital. My neurologist wanted me to get an MRI. He confirmed that I had a stroke and likely had one previously. They wanted to keep me in the hospital overnight, and the doctors could not figure out why I was having strokes. The next morning, I was taken to a different hospital, and I was at the hospital for five days. I had to take a leave of absence from school. I came home and started going to occupational therapy, speech, and physical therapy because I had lost the use of my left hand from the stroke. I was sad that I was missing out on college.
After the September incident, I ended up having three more strokes. During November and December, I was in the hospital on four different occasions. The doctors did not know what was wrong with me, so I had so many tests. I had several spinal fluid taps (CSF), bloodwork, angiograms, and more MRIs than I can count. I even had a brain biopsy in December. Ultimately, they were looking for vasculitis, which is an autoimmune condition where your immune system attempts to destroy your tissues. None of the tests were conclusive for vasculitis.
Starting in January, I was on a lot of medicine, including a heavy dosage of prednisone. The prednisone was the key to keeping me from having strokes, but I gained 30 pounds in one month and it made me feel crazy. The medication made me so hungry, and my mom and stepdad had to hide food from me because I was eating so much. The doctors in Atlanta did not know what to do with me, so they suggested that I see specialists at the Cleveland Clinic. After more imaging studies and a full workup at Cleveland Clinic, they told me that I have Central Nervous System Vasculitis (CNS Vasculitis), and possibly a long-standing vasculopathy of unknown etiology known as Moya Moya Syndrome. CNS vasculitis targets the arteries in my brain causing inflammation and strokes. The doctors prescribed me chemotherapy for four months, which I completed in September 2023. I am now on CellCept, an immunosuppressant. The chemo has made my hair very thin, but I did not lose all my hair (thank goodness!).
I am doing well considering everything that I have been through in the last year. I completed physical therapy in July 2023, and I was recently released from speech therapy. I am back in school; everything is going well with school so far. In January 2024, I will have to have brain surgery to correct the arteries in my brain. I will have to take time off school to recover. I have planned out the rest of my time at GMC, and I hope to graduate with my AS in middle-grade education in the Spring of 2025. My sickness has impacted my life because I have had to start over, reevaluate college, and decide where I’m going to go to complete my degree. Also, I must go to a lot of doctor’s appointments, and I have been unable to get my license as planned. I have realized that it is going to take me longer to get my degree and license, and I just try to be patient.
I have had many people supporting me during this time, and for this, I am grateful because it’s been very hard for me. Not only have I had medical issues to deal with, but I had to leave college and my friends, and start over again. It has been an emotional rollercoaster, but I am taking each day as a gift and trying to move forward. I have learned to be patient with myself and others and to never give up.
On February 25, Ingrid’s mom, Kari, is running the Atlanta Publix Half Marathon in support of her daughter and the VF. She wants to raise $5000 before race day. As Kari said, “Remember: Every dollar counts and is a step closer to a better life for someone you know with vasculitis.” Donate now.