One week till NMO patient Day in LA! Someone recently asked what we get out of going. My answer was that it’s an opportunity to hear firsthand about new developments in research and treatments. Last year we were able to learn about three (!!) clinical trials that were being launched. Each of the pharmaceutical companies involved sent a representative to give us a detailed explanation of how their clinic trial would work. We were able to ask questions and to gain a greater understanding about the science behind each drug trial.
We also have the opportunity to meet others who live with the same disease as we do. When you are dealing with something as rare as NMO, just being able to trade stories about our personal experiences with others who “get it” is really meaningful. Years ago, as a crisis line counsellor, I took some advanced training on grief. One of the things that I learned was that every time you tell your story, you heal a small part of it. Living with a disease as serious as NMO is, we find ourselves constantly having to grieve some aspect of our life-an ongoing loss of health (vision, mobility, etc) a loss of a job, the strain it can put on our relationships, and so on. I think there is a measure of healing to be had when we gather together, whether we recognize it or not. Those connections are so important.
When we gather together, it is, (for lack of a better description) a way to shore up our souls. It gives us great hope to know that we have the passion of the Guthy-Jackson Foundation leading a powerful and inspired community of researchers and clinicians who are partnering with NMO patients to seek out better treatments and ultimately to unravel the mystery that is NMO so we can cure it. That hope lives and breathes in that conference room. When we go home, we carry it with us and that my friends, is priceless.