First-Ever Teen NMO Support Group Meeting Recap by guest blogger and NMO Support Group Leader Heather Sowalla
As part as part of the foundation’s 2016 NMO Patient Day, I had the honor of leading the first-ever Teen NMO Support Group meeting.
Knowing what they are going through and how they are feeling, I was nervous and excited at this rare chance to help so many teens face-to-face.
Teen and young adults met in one of the conference rooms at the LAX Hilton Hotel. It was the first time they had ever met other teens living with NMO. They seemed nervous, but happy to be there. We started by introducing ourselves and giving the group brief bios. We talked about where we lived, our ages, etc. We talked about what it’s like to have NMO and how it affects their daily lives. We discussed treatments they’re on, for both prevention and maintenance. We discussed family, friends, and relationships while having NMO. We talked about how NMO changed their lives with school.
It seems many of them were worried about how to recognize flares from pseudo relapses. They also showed great concern for body appearance and relationships. Also, whether they could go to college in the future, or if NMO would prevent that.
I believe they took away valuable information. They realized they were not alone. I introduced them to a few of our younger success stories, such as one person who got a doctorate, and spoke to them about marriage, and others who have NMO who got married. I tried to instill in them that NMO should not stop them from pursuing their lives.
Everyone was thankful the foundation hosted NMO Patient Day and this support group meeting. They asked to meet every year. They also planned to join the Teen NMO Support Group on Facebook.