Six Best Practices for the Newly Diagnosed

Two ladies discussing Juvenile Myositis Research

You or a family member has just been diagnosed with juvenile dermatomyositis or juvenile polymyositis and you feel as if the world has shifted under your feet. You’re not alone. The founders and volunteers here at Cure JM have gone through the same shock, uncertainty and fear that you no doubt are experiencing right now.

In speaking with JM families, we’ve identified six “best practices” that are absolutely crucial when you, your child and family are battling juvenile myositis:

  1. Manage your medical team
  2. Keep a journal
  3. Be prepared
  4. Get informed
  5. Remember sun protection
  6. Seek support

1. Manage Your Medical Team

Find a Doctor Who is an Expert

Find a doctor who has experience treating juvenile dermatomyositis or juvenile polymyositis. Specialists trained to care for children with Juvenile Myositis are typically Pediatric Rheumatologists.

Find a Pediatric Rheumatologist near you

Communicate with Your Doctor

Cure JM asked JM parents to share their thoughts on communicating with their child’s physician. Below is a compilation of their advice:

  • As a parent, you are your child’s #1 advocate!
  • Establish an open dialogue with your child’s doctor. During the initial visits, be prepared with questions. Your doctor should be more than helpful in responding to your concerns.
  • Write down the doctor’s instructions and responses to your questions. You may not remember what all transpired during the appointment, writing down important information is vital.
  • You should probably have another adult with you who can listen as well. Two heads are better than one!
  • We all inevitably forget to ask a question! Don’t hesitate to contact the doctor’s office with questions in between appointments.
  • Keep a list of important phone numbers handy.

2. Keep a Journal

Starting Your Journal or Log

You may want to start by summarizing your child’s journey thus far. When did you first notice symptoms? When did you see the doctor? How did the diagnosis phase transpire?

Then begin each new entry with the date. Log any symptoms, unusual occurrences, questions, doctor instructions and discussions (during appointment or over the phone). Keep track of medications, procedures and results. Log any fevers, illnesses.

Bloodwork/Laboratory Results

Request copies of your child’s lab results and keep them in your journal or on file. This will be very helpful for future reference and when seeking second opinions or visiting other specialists.

3. Be Prepared

A JM diagnosis is the beginning of a long, and at times frightening, journey for your child. Read Child Life Specialist Cinda McDonald’s answers to some of parents’ most common questions.

4. Get Informed

  • Spend time going through the Cure JM website to learn more about Juvenile Myositis.
  • Remember that each child’s disease experience may be different.
  • Participate in Cure JM Town Halls, where you will receive expert advice from the world’s leading juvenile myositis doctors.
  • Join Cure JM to receive our monthly newsletter and connect with other families through local chapters.  

For information on JM research, visit the following links:

Juvenile Myositis Research Links

Clinical Outcomes In JDM
www.medscape.com/viewarticle/444390

Dermatomyositis Information
www.emedicine.com/derm/topic98.htm

Lipodystrophy in JDM
www.jrheum.com/abstracts/abstracts01/610.html

You are your child’s best advocate. Parental intuition has served so many of us well! If something doesn’t seem right to you, don’t hesitate to question it.

5. Remember Sun Protection

Children with JDM need to be careful when it comes to sun-exposure. Juvenile Dermatomyositis causes a sensitivity to the sun and ultraviolet light. In addition, certain medications can cause further photosensitivity. Skin tone may also add to the photosensitivity.

Parents of children with JDM have been advised by their physicians to be diligent about applying sunblock several times a day, providing their children with protective clothing and hats, as well as keeping them out of the sun during peak hours.

Some families have reported that they believe the sun may have triggered their child’s JDM and have been told by their physicians that the sun may be one of the triggers for the disease.

Here are a few links to products that JDM families report they use:

Sun Precautions

www.sunprecautions.com
Sun protective clothing including pants, shirts, wide-brimmed hats, parasols and sunblock products.

6. Seek Support

Once you’ve read through this page, we also suggest that you check out the Top Ten Tips for Families Living with JM and our Video for Newly Diagnosed Patients. We would also like to encourage you to complete our Patient Registration. Once you’ve signed up, you’ll receive regular Cure JM Foundation newsletters, a copy of the Cure JM Welcome Kit, and full access to the Cure JM Family Support Network.

Remember, you’re not alone in this – we’re here to help.

*Cure JM Foundation does not endorse the individuals described therein but rather provides this as an informational resource. In no event shall Cure JM Foundation be liable for any decision made or action was taken in reliance on the information contained therein. 

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Treatment Plans for Juvenile Myositis

A treatment plan is based on many factors, including the severity and expression of the juvenile dermatomyositis (JDM). Each case is different and the symptoms can change over time.

Sun Protection

What are the latest approaches to managing skin disease and the best strategies for keeping my child sun safe? Featuring Drs. Susan Kim and Adam I. Schiffenbauer.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.