My MOGAD Story, Part Two by Becca S

Read part one of Becca’s story here.

After obtaining my RN license, I worked on an inpatient neurology unit in DC, hoping I could help other people living with neurological diseases. It was great to be able to empathize with and comfort people who may have had similar symptoms as I did, but it was also exhausting and hard on my body. Because of the stress of the job, I was sick a lot and had a couple of flares of optic neuritis. Eventually, I decided I needed to take care of my mental and physical health, so I left that job. I’m so grateful for my experiences and that I accomplished my goals of finishing nursing school and working as a nurse, but I’m not sure I’d do it again if given the option. I have since learned how to listen to my body better so that I don’t push it so much it starts to break down, which is often a challenge for those of us with chronic conditions.  

After leaving my job and being stuck inside because of COVID-19, I decided to seek support online. I went onto Facebook and found a group run by The MOG Project that had about 500 members at the time. I started getting more involved, and in June 2020, I started a weekly support group for young adults with MOG antibody disease and NMOSD. Since then, I have met hundreds of people with MOG and NMOSD, some with similar stories to mine and some with very different experiences. I have connected with these people more than I’ve ever connected with my peers, and I am so grateful to have found people who truly understand what it’s like to live with chronic illness.  

When Dr. Levy moved to Mass General in Boston in 2019, I called him to schedule an appointment. When we spoke, I told him I had recently resigned from my nursing job, and he offered me a job starting up the first clinical trials in MOG. I moved in 2021 and have worked in the Neuroimmunology Clinic at MGH ever since. I helped launch the first two clinical trials for MOG, which are both active and enrolling patients at MGH and various hospitals in the US. I’ve also gotten the chance to learn from and help educate new doctors in the field, which has been incredible. I have been able to share with the next generation of doctors what I feel has been overlooked in the MOG-AD research, what my experience as a patient has been, and how care can be improved for me and my peers. It’s been incredible working with doctors, researchers, nurses, coordinators, and everyone involved in trying to find a cure for rare neuroimmune diseases.  

As I got more involved in the world of MOG, NMO, and related diseases, I continued to learn more about the different patient organizations and the work they do. I started listening to SRNA’s Ask the Experts podcasts, learned more about SRNA’s mission, and decided I wanted to get involved. I had my first SRNA volunteer experience in July 2023 at the Quality of Life Family Camp in San Antonio, Texas. It was a truly magical experience for which I’m so grateful. Camp is so special because it offers a place for patients, families, healthcare providers, and volunteers who understand the world of chronic illness to be together for a week, be themselves, and support and learn from one another. Although not everyone at family camp has the same symptoms or disease, they all understand the struggles of dealing with our daunting medical system, endless appointments, and finding support. I wish there were more places like family camp. I recently also became a Peer Connect Leader, and I am excited to continue meeting and supporting these amazing patients with MOGAD and related diseases. I am so thankful for SRNA and the community they’ve created.  

Whether you’re a patient, supporting a patient, or a health care professional, I encourage everyone to contribute to advocacy organizations like SRNA. These non-profit organizations need all the help they can get, whether through financial contributions or volunteering. If you volunteer, I promise you’ll meet so many caring, supportive individuals focused on improving care for people with rare neuroimmune diseases.