Raising Awareness for Rare Neuroimmune Disorders

In February, we recognized Rare Disease Month to create awareness for rare neuroimmune disorders, culminating with an online #RareRoundtable event on Rare Disease Day. The roundtable featured two panelists: Kris Wilkes and Cyrena Gawuga with Cyrena moderating the session. They shared their experiences of being diagnosed with rare diseases such as Acute Disseminated Encephalomyelitis (ADEM) and Transverse Myelitis (TM). 

Kris shared, “They told me that I’d never play basketball again and that’s always been my strongest goal is to get back on the court and play. Now, I feel like I’ve worked hard the last 4-5 years and I’ve got to a place where my body, my mind, my spirit, everything is feeling like those days when I did play basketball. To set a goal for something, being able to achieve that goal or work towards that goal, especially for something where they tell you you can’t do something, for a lot of people, that’s discouraging. I take that type of thing and I want to overcome it.” 

When asked by the audience, what’s one piece of advice you have for young doctors that you’ve learned from your own physician-patient relationship, Cyrena shared, “The most important thing is to listen to your patients and listen to what they’re telling you about their personal experience, but what they’re going through, the symptomatology that they’re reporting and know that everything isn’t textbook.”

At the same time, medical students gathered at NYIT College Of Osteopathic Medicine in New York, thanks to the leadership of Minaal Zahid in collaboration with the college’s ACONP and SIGN clubs, and SRNA. Minaal shared her connection to rare neuroimmune disorders and why she wanted to get involved with SRNA saying, “My younger brother was diagnosed with NMOSD at the age of 9 after experiencing three different attacks of the disease. Unfortunately, it took a prolonged and challenging experience, which eventually left him blind in his left eye, before receiving a proper diagnosis. Due to lack of awareness, many medical practitioners lack familiarity with these ailments, and these diseases often receive minimal coverage during medical school education. I believe that early exposure of medical students to these conditions and their impact on patients and caregivers is crucial. Volunteering at SRNA and holding a Rare Disease Event at my medical school has allowed me to be a bridge between patients and future physicians. By creating awareness and advocating for better education and understanding of rare neuroimmune diseases, we can work towards improving the quality of care for all those affected by these conditions.”

During the event, students learned about rare neuroimmune disorders and their impact on patients and families. Guest speaker Dr. Adena Leder joined the event to lead a discussion with two of her patients, Amy and Tanya. Amy and Tanya were both diagnosed with seronegative encephalitis and epilepsy. During the discussion, they talked about their symptom onset, diagnosis, symptom management, and what affect their conditions have on their loved ones’ lives. After the discussion, the medical students participated in a trivia game to test their knowledge of the rare neuroimmune disorders. Dr. Aaron Abrams of Cleveland Clinic then joined the event virtually to give a presentation on diagnosing rare neuroimmune disorders and to answer questions from attendees. Krissy Dilger, SRNA Research and Program Manager, was also there to share about the Siegel Rare Neuroimmune Association. Through this event, future doctors learned about rare neuroimmune disorders and gained a better understanding of the challenges faced by those living with them.

Both events highlighted the importance of supporting those living with rare diseases, educating the public about these disorders, and advancing research efforts. Beyond Rare Disease Day, raising awareness for rare neuroimmune disorders is an ongoing effort. In the coming months, we invite you to get involved in raising awareness for NMOSD in March, MOGAD in April, ADEM in May, TM in June, and AFM in July.

During these awareness months, we hope you will join us at upcoming events, share social media campaigns, participate in educational sessions, and organize fundraisers to support research and advocacy efforts. These upcoming awareness months bring together the community of patients, caregivers, medical professionals, and advocates in the rare neuroimmune community. If you are hosting your own event or know of one in your local community, reach out and let us know so that we can highlight acts of awareness across the globe.

To kick off each awareness month, we are hosting online Together events because, as we always say, we are stronger together. These events are a chance to connect with one another, share experiences, learn from medical experts, and build momentum for a movement of rare disease advocates. Today, you can register for NMOSD Together on March 2-3, MOGAD Together on April 5-6, and ADEM Together on May 4-5, and save the date for TM Together in June and AFM Together in July.

Mark your calendars and get involved in these upcoming awareness activities. Together, we can make a difference.