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Cure JM Foundation 2017 National Conference and Fundraiser

Teens & Young Adults: Support and Self-Advocating

Written by Flora Mellana-Edison

Teens and Young Adults Discussing Self-AdvocacyAnna and I started the workshop off by telling everyone our history with JDM and then we had everyone else share their experiences. Then we had people ask questions either to us or to each other.

Some questions that people had were about how to deal with stress and anxiety, how to find small things that they can control about their lives, what to do in the hospital when they get bored, how to talk to friends/classmates about what is going on, and many more things. Other people would tell stories and then ask for advice about what they should have done in that situation. Others just talked and got things off their chest.

It was a pretty open group of teens and I found that they all had great questions and were willing to talk about just about everything. I think that it was really helpful for some of the newly diagnosed teens to hear that they weren't alone and had others who understood what they were going through. It was also nice to hear about other's experiences because it was eye-opening to see that there were many people who have had bad experiences with doctors and friends when dealing with their JDM. It was a really positive experience to share our stories.