JM Links
Looking for more information on JM? Want to see how other people affected by JM are coping? The below resources may be able to help you in your journey to understand JM and manage its impact on your family.
Books
Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and
Healthcare Providers
Edited by Lisa G. Rider, MD, Lauren M. Pachman, MD, Frederick W. Miller, MD, PhD and Harriet Bollar
Published by TMA
This comprehensive guide to juvenile dermatomyositis was funded by Cure JM Foundation and includes expert information from over 80 medical professionals.
Myositis and you will soon be available as an eBook. Check back soon for more details.
Coping with a Myositis Disease
By James R. Kilpatrick, Forward by Dr. Aziz Shaibani
Available at: www.amazon.com
Tattooed With Flowers
by Suzanne Edison
These 10 poems reflect a mother's journey with her daughter from diagnosis of JDM through the first 3 years. They are excerpted from a larger book that was a finalist in the 2008 Midnight Sun Chapbook Contest. Published with grants from The Seattle Office of Arts and Culture and The Individual Artists program of 4Culture of King County, Seattle, Washington. All proceeds from the sale of this book go to Cure JM Foundation.
To order, please contact:
It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain, Rheumatic Diseases, and the Latest Treatments
By Dr. J. A. Thomas Lehman M.D.
Available at: www.amazon.com
Myositis: Facts, Feelings and Future Hopes
By Jenny Fenton
Available at: www.amazon.com
Living with Juvenile Arthritis:
A Parent's Guide
by Kimberly Poston Miller
This is a must-read for parents of children just receiving a diagnosis of Juvenile Arthritis or any other autoimmune disease, such as Juvenile Myositis (JM). It's an essential guidebook for dealing with the social, family, school and medical aspects of a chronic illness. Kimberly Poston Miller provides solid advice on how to maximize your time with doctors, work with insurance companies, and advocate for your child. She focuses on how a diagnosis affects the entire family, and the importance of nurturing these relationships within the constraints of caring for a child with a chronic illness. Most importantly, when you read this book, you will feel like you have a new source of support and a new friend in your child's battle against JA or JM, or any disease. Kimberly provides a sense of warmth, compassion, hope and encouragement that will give you the strength necessary to begin or continue your journey as a successful caregiver.
Book Review by: Shari Hume, Cure JM Foundation Co-Founder
Available at: www.amazon.com
Multimedia by JM Familes and
Artists Supporting Cure JM Foundation
- Perfect Day
Award winning singer/songwriter Aoede (“Best Folk Recording” and “Best Folk Music Video” at the 2013 Indie Music Channel Awards) suffers from Dermatomyositis, a debilitating disease that attacks the immune system, muscles and skin, for which there is no known cure. Yet, while Aoede’s body may be under attack, she never lets the disease affect her mind and spirit and uses that strength to encourage others.
Purchase Perfect Day on iTunes
(all proceeds from downloads will benefit Cure JM) - Soldier On
Doctors diagnosed Samantha Anne Martin of Lafayette, Calif., at age 3½ with Juvenile Myositis. Now 12, Martin, who performs under the name Penny Lane, collaborated with her father to write the song "Soldier On" in honor of all the children and families who struggle with the pain and heartbreak that Juvenile Myositis can bring.
Purcahse Soldier On on iTunes
(all proceeds from downloads will benefit Cure JM)
Watch the Music Video featuring other JM patients on YouTube
- Erin's Song - You're Beautiful Today
(Music by Cure JM Dad James Cademan) -
Purchase Erin's Song on iTunes
(all proceeds from downloads will benefit Cure JM)
Watch the Music Video on YouTube - Can't Stop the Rain
(Written by G.I. and Jo)
The song was inspired by a young girl with JDM and cover art for the song was provided by a JM patient.
Purchase Can't Stop the Rain on iTunes
(all proceeds from downloads will benefit Cure JM) - Grace's Journey
Watch "Grace's Journey" on YouTube - Mason's Story - "Miracle"
(Music by Jessica Lerner)
Watch "Miracle" on YouTube - Mason's Story - "Hope and Prayer"
(Music by Savannah Outen)
Watch "Hope and Prayer" on YouTube - Parker’s Journey and the Start of Cure JM
Watch "Parker's Journey" on YouTube - Cure JM Foundation
Videos
Blogs & Websites by JM Patients and Families
- Brianna's Journal
www.caringbridge.com/tx/brianna - Julia's JDMS Diary
www.ralphb.net/JDMS - Madeleine’s Journal
www.caringbridge.org/tx/madeleine - More Than Skin Deep
(Documenting the life of a young woman with JDM)
catiekeen.blogspot.com - Ximena's Adult JDM Blog: My experience with JDM/
Mi experiencia con dermiositis juvenil
www.myspace.com/jdmblog
General Information
- National Institute of Environmental Health Sciences (NIEHS) Autoimmune Diseases Fact Sheet
www.niehs.nih.gov/health/topics/ conditions/
autoimmune/index.cfm - JM Research Links
Please note that Cure JM Foundation cannot control and is not responsible for any linked content.
amily Support
Newly Diagnosed
Helpful Information for the Newly Diagnosed
School Accommodations for JDM or JPM
Child’s Checklist for Dr. Visits
Q & A with Child Life Specialist, Cinda McDonald
Sun Protection Products and Resources
JM Patient Online Journals and Other JM Links