Kim and I make a good team – she excels at activism and involves us with the SRNA, NORD, and Rare Disease Day events at our Capitol and sporting events at Shepherd Center. I handle communication and organizing the group meetings. We’ve got a tremendous group of caring and open people who have experienced just about every symptom and situation possible. When stumped, we refer people first to their doctor, but also to the Guthy-Jackson Foundation and SRNA for information, and various Facebook groups, including our own, for additional support.
The effects of any of the rare neuroimmune disorders can be devastating – not just physically, but emotionally, financially, and socially. However, we live in a marvelous time where people with a rare disease don’t have to live in a vacuum of information and relationships. Through the internet, you can learn so much about your disease (just search out reliable sources!); through social media, you can connect with others like you; through online meetings, you can participate even when you are miles away from a fellow patient. Through Guthy-Jackson Patient Days and SRNA Symposiums and Family Camps, you can spend time with medical experts, researchers, and other patients. Through their websites, you can view videos of the talks if you can’t make the events. And from a support group in your area, you can get the experience-based knowledge, sympathy, empathy, comedy and support you need to overcome NMOSD and the rest of the rare neuroimmune disorders. NMOSD has ‘blessed’ me with a lot of crappy things, but it has also truly blessed me with friendships, inspiration, and an opportunity to help others, and I am thankful for it!