Cure JM Foundation 2017 National Conference and Fundraiser

Teen Perspective: Q&A Panel for Parents led by Teens

Answering Caregiver QuestionsIn this session, a panel of teens and young adults answered questions from caregivers (sometimes even questions that parents might be reluctant to ask their children).

“It was very informative to hear directly from the teens and young adults,” said one father, Chris Bokis.  “I appreciated their honesty and their perspective and learned a lot about what my child might be feeling.”

The teen panel shared about their experiences with:

  • growing up with Juvenile Myositis
  • their experiences with JM treatments
  • some of their coping techniques

“One insight revealed for me,” said Cure JM Co-Founder, Tom Hume, “was when the teens and young adults were asked what they feared most.  For many, their greatest fear was if JDM could be passed along to their children.” (Based on our current understanding of JM, it would be unlikely for someone affected by JM to pass this disease onto his/her child). “The teens and young adults were also very concerned that they worried their parents too much.”

Added Shari Hume, Cure JM co-founder, “They all showed a level of maturity way beyond their years.”

A special thank you to the teens and young adults who participated in this panel and shared their valuable insights with the caregivers present.