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Cure JM Foundation 2016 Annual Conference Recap

Workshop for Newly Diagnosed Families

Two dozen parents attended the newly diagnosed session presented by Ragan Cantrelle, Cure JM Board of Directors and Thuy Beam, R.N., Rheumatology Department, Riley Hospital for Children.

The theme of this session was The Three “C’s” of being Newly Diagnosed with Juvenile Myositis.

#1 Caring for your child, including:

  • Informing yourself about Juvenile Myositis and treatments by ordering the book Myositis and You, available here. This comprehensive guide features over 450 pages with contributions from over 80 experts and medical professionals. The book was funded by Cure JM and  co-edited by one of Cure JM’s founders.
  • Learning about common medications used in Juvenile Myositis patients and some common side effects. The easiest way to learn about the medications is from the book Myositis and You.
  • Learning about Juvenile Myositis, ask your doctor any questions you have, take notes and get informed by reading up on the Cure JM website.
  • Asking your doctors to explain the common lab tests and what they measure.

#2 Connecting with other families

  • Join Cure JM, it’s free!  Join now here.
  • Join the Cure JM Message Board and connect instantly with hundreds of other Cure JM families. Join here.
  • Attend an event in your area, upcoming events are always listed here.
  • Attend a Cure JM Conference - the next one is scheduled for February 17th through the 19th in Austin, Texas. More information coming soon.

#3 Coping with the diagnosis

  • Coping is important for the whole family including the JM Child, Siblings, Caregivers, Parents, Grandparents, etc.
  • Ask your doctor about resources at your hospital including Child Life, Social Work, Counseling, Financial Counseling and more. Hospitals, churches, schools are there to help and have trained professionals that can be very helpful. Keep asking until you find the help that your family needs.
  • Reach out to friends, family, neighbors. Don’t be afraid to let them help, especially during the first 6 -12 months. Oftentimes it can be easier to assign one close friend or family member to coordinate all of the help and be in charge of updating friends and family about your child’s health.

Questions?  We are standing by to help, please contact .