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 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 have identified six “best practices” that are crucial when you, your child, and your 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 transpired during the appointment, so 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 need to remember to ask questions! 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 an appointment or over the phone). Keep track of medications, procedures and results. Log any fevers, illnesses, etc.

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 a second opinion 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 the most common questions asked by parents.

4. Get Informed

  • Spend time going through the Cure JM website to learn 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

Dermatomyositis Information

Lipodystrophy in JDM

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 sensitivity to the sun and ultraviolet light. In addition, certain medications can cause further photosensitivity, and 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, and 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 suggest 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 provides this as an informational resource. In no event shall Cure JM Foundation be liable for any decision made or action taken in reliance on the information contained therein. 

Doctor and young juvenile myositis patient.

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.

Join Cure JM

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

Cure JM supports families, patients, and the juvenile myositis research community.