Resources for the Newly Diagnosed
You or a family member has just been diagnosed with Juvenile Dermatomyositis (JDM), Juvenile Polymyositis (JPM)
or Juvenile Amyopathic Dermatomyositis, 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.
To make things a little easier, we've compiled a number of resources based upon
the experience of many parents who were once where you're at right now.
First, sign-up on our patient registry so you don’t miss out on the latest Cure JM news. Next, we suggest that you check out the Top Ten Tips for Families Living with JM, our special Video for Newly Diagnosed Patients, as well as the below suggestions for the newly diagnosed. We would also suggest that you regularly visit the Tips page, as we are constantly adding new ideas based upon the experience of JM families.
Remember, you're not alone in this – we’re here to help.
MANAGE YOUR MEDICAL TEAM
Find A Doctor Who's an Expert
Find a doctor who has experience treating JDM or JPM. Specialists trained to care for children with Juvenile Myositis are typically Pediatric Rheumatologists.
To find a Pediatric Rheumatologist near you, go to:
www.rheumatology.org/directory/geo.asp?aud=mem (American College of Rheumatology)
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:
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As a parent, you are your child’s #1 advocate!
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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.
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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.
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You should probably have another adult with you who can listen as well. Two heads are better than one!
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We all inevitably forget to ask a question! Don’t hesitate to contact the doctor’s office with questions in between appointments.
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Keep a list of important phone numbers handy.
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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
Requests 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.
The following website may assist you in understanding laboratory testing:
http://www.carbonbased.com/modules/sections/index.php?op=viewarticle&artid=6
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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.
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GET INFORMED
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Spend time going through the Cure JM website to learn more about Juvenile Myositis.
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Remember that each child’s disease experience may be different.
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Search the Internet for information and participate in Cure JM’s JDM Discussion board to learn what other families are experiencing and who is treating their children.
For information on JM research, visit
the following links:
PubMed
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed
Calcinosis in Juvenile Dermatomyositis: Pathogenesis and Current Therapies
www.pedrheumonlinejournal.org/April/calinosis.html
Clinical Outcomes In JDM (requires site registration, but registration is free)
www.medscape.com/viewarticle/444390
Clinical Trials
www.clinicaltrials.gov/ct/gui/action/SearchAction?term=Connective+Tissue+Disorders
Dermatomyositis
Information
www.emedicine.com/derm/topic98.htm
www.thedoctorsdoctor.com/diseases/dermatomyositis.htm
Guidelines for safe use of IVIG
www.rheumatology.hss.edu/pat/specInfo/sideEffects/ivig_use.asp
Juvenile Dermatomyositis Presenting With Rash Alone -- Eisenstein et al. 100 (3): 391 -- Pediatrics
pediatrics.aappublications.org/cgi/content/full/100/3/391?maxtoshow=&HI
Juvenile dermatomyositis associated with lipodystrophy
www.ijdvl.com/article.asp?issn=0378-6323;year=2003;volume=69;issue=5;
spage=343;epage=344
Lipodystrophy in JDM
www.jrheum.com/abstracts/abstracts01/610.html
Association of TNFa-308A Allele
www.current-reports.com/article_frame.cfm?PubID=RR03-5-1-03&Type=Abstract&KeyWords=Allele&HitNum=91
Vitamin D Lowers Inflammation
www.mercola.com/2004/feb/28/vitamin_d.htm
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BE AN ADVOCATE
You are your child’s best advocate. Parental intuition has served so many of us so well! If something doesn’t seem right to you, don’t hesitate to question it.
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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.
Total Block
www.totalblock.com
Sunblock
Additional sites may be found by searching the internet using keyword: "sun protective clothing".
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SEEK SUPPORT
Visit our online discussion board. Parents who have walked the same path you have are here to support you.
Sign up for our Family Support Network when you register with Cure JM’s Patient Registry and get connected with other families in your region.
Take time for yourself. Seek out friends and family who are supportive and will share your burden.
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