A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.
To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.
This year, for the 2016 NMO Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.
The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.
Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.
I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.
We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.