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Juvenile Dermatomyositis (JDMS) recently diagnosed & have many questions

By July 20, 2008 - 5:22am
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My good friend's 4-year old daughter was just diagnosed with juvenile dermatomyositis on Wednesday, and we are scared and shocked! What does this mean for the long-term health of her daughter? My friend also has a 12 month old daughter; what is the likelihood that she would develop this disease, too? Any way to prevent it?

I was wondering if you all had access to a pediatric rheumatologist, as my friend has some questions she would like to ask (for a 2nd opinion, they really like their current doctor).

Here are some of our initial questions:
- What treatment options are available, both traditional and alternative?

- What kinds of physical improvement can we expect with treatment, and how likely is it that this disease will go into remission?

- Any dietary changes or other lifestyle changes that would help?

Any other information would be helpful, as we're just beginning our research to understand this disease/disorder.

thank you so much!

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EmpowHER Guest

My son is currently 18 and was diagnosed at 6. He is doing fine. It has been a very long road but he leads a relatively normal life. He is receiving IVIG now and has been for the last 3 years, due to the onset of calcinosis. Lisa Rider from NIH (National Institute of Health) is a wonderful "free" resource. We only live 2 hours from Washington DC so a trip to see her for us is easy. However, people from all over come to see her. When we were there, there was a child who had come all the way from Colorado. I would recommend this. Early intervention is HUGE for successful treatment! She and her team work with our doctor who is in Richmond VA to help come up with the best treatment plan for my son. Please advise her to contact Lisa Rider at NIH. She can find the contact information online. She can also become involved with Cure JDM organization who is very helpful.

May 16, 2017 - 11:05am
EmpowHER Guest

I am not 20 years old, but I was diagnosed with JDMS when I was 7. Its a long and tough journey but with God and loving parents, as long as she takes her medications and follows what the doctors say she will do just fine. I am currently in remission, but I've had the disease on and off for pretty much 14 years now. I was diagnosed very early, and if it wasnt for that, I have no idea where I would be. I went to Dr. Jane El-Dahr at Tulane University Medical Center in New Orleans, LA. She's an amazing doctor, and I love her to death. I really hope that things are going great for all of your children. I aslo ask that if your children are interested in sports, please encourage them to play. I played softball up until I was 10, and had to quit because the disease came back on and was pretty rough. I would have given anything to keep playing. Since that happened, I've been out of the sports stuff and have honestly become out of shape. One of the main things with this disease is to stay fit and in shape, the stronger your muscles are, the easier you are able to fight this illness. I wish you all the best of luck.

March 28, 2011 - 10:20pm
EmpowHER Guest

My daughter is four years old and was diagnosed in July of last year. She's doing great!!! a total 360 from the little girl we cold barely walk last year. She sees her hematologist monthly during her scheduled IVIG's and she's currently at 90%. By the grace of God things have been improving. I'm confident your daughter will do the same. Be of good courage.

God Bless you!!

ZeMirahs Mommy

October 11, 2008 - 12:42am

Thank you for the great information! I had not heard of this hospital, and will pass along the information to my friend.

July 27, 2008 - 5:40am
EmpowHER Guest

Hi there

It would be a really good idea for your friend to try and get a referral to the rheumatology department at Great Ormond Street Hospital as they are specialists in juvenile dermatomyositis. In fact they along with UCL house the Juvenile Dermatomyositis Research Centre in the UK. They have juvenile dermatomyositis clinics every fortnight on a thursday.

Please see the link below for how to get a referral:

Here is a factsheet about juvenile dermatomyositis:

With regards to your questions, the sooner your friends daughter starts getting treatment the better, so that muscles do not waste too much. Treatment involves medications (there are a number of options on this front) combined with physiotherapy. Occupational therapy may be needed if she has problems moving limbs and doing things etc. The outlook for JDM is usually good and most children will make a complete recovery eventually but again the earlier the treatment begins the better the outlook - early, aggressive treatment is the way forward.

JDM is treatable with medication aimed at controlling the disease process until it goes into remission - so please dont get too disheartened.

I am not aware of any alternative therapies though I am sure there are some. However it is important that medications are used if they are needed.

One thing to consider is sun exposure. The rash associated with JDM can be made worse by the sun and there are other effects known too. It is a good idea to apply high factor 30 suncream when the girl is going outside and wearing a cap/hat would be a good idea too. Also during the middle of the day when the sun is more intense to keep in the shade or inside.

I really would recommend trying to get to Great Ormond Street Hospital though, they really are amazing at treating this condition amongst other rheumatological problems.

I hope this is of help and wish your friend and her little angel daughter good luck for the future. Please all keep positive!


July 25, 2008 - 9:25am

As we wait to hear from some of our specialists, I did find some online resources and health organizations for you to look into, all related to dermatomyositis (not all specifically juvenile-onset).

The Journal of Pediatrics has some clinical-based studies and letters to editor related to JDMS (note: it is heavy medical wording and not patient-friendly reading):

American Autoimmune Related Diseases Association, Inc.

Arthritis Foundation

Muscular Dystrophy Association

Myositis Support Group

NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse

Myositis Association

Autoimmune Information Network, Inc

European Society for Immunodeficiencies (ESID)

AutoImmunity Community

July 20, 2008 - 12:41pm
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