Juvenile Dermatomyositis – Our Story

My daughter has juvenile dermatomyositis.  Ever heard of it?  I hadn’t either.  Until she was diagnosed with it.  It affects 3-5 in a million children a year in the United States.  There’s no cure.    They don’t know exactly what causes it, but they do know there is a genetic link that is triggered by environment factors.  The disease affects the muscles and skin.  An autoimmune response goes “wild” or “unchecked” and depending on the child and the severity of the disease, children are left with the inability to do simple things that they used to do like run and play.  Walk up stairs.  Get up off the floor, or dress/undress themselves.  Blow dry their hair, or squat down or extend their arms without them burning.  They probably have rashes on their face, chest, upper back, elbows, knees, arms and especially hands.  If things are really bad, they might have trouble swallowing and breathing.  They may even have bumps under their skin called calcinosis.

cure jm

My daughter doesn’t want anyone to know that she has juvenile dermatomyositis.  She wants to be just like everyone else her age.   In most ways, she is.  She still goes to school, she has friends that mean so much to her, and she is interested in all the things girls her age are interested in.  But, in a fundamental way that sets her apart from her peers, she IS different.  She is going through something that is extremely rare and unfair.  It’s just plain not fair that her body chose to react this way to the combination of environment factors that brought her disease on {we think her triggers were UV rays and a virus} subjecting her to what she’s been through.  However, because of what she’s going through, she’s had the opportunity to grow in ways most kids her age haven’t.  She’s become mature beyond her years and empathetic to those that are hurting that will serve her well the rest of her life.  She’s become a role model for our family, and an example of how to rise to the challenges that life throws her way with a smile.

juvenile dermatomyositis

When you ask how my daughter is doing, this is what you should know:  she’s the strongest person I’ve ever met.  She never complains, and she is subjected to so, so much, and has been for almost a year.  She’s hospitalized 3 days a month.  She has to get outpatient treatment once a month.  She has to take medicine that she hates every. single day.  One day a week she has to get an injection that makes her so sick that she doesn’t want to do anything at all.  That doesn’t include specialist appointments.

When you ask how I’m doing, you should know that my overriding emotion is pride in my family.  My other children never complain either.  Ever.  Ever.  Four other little and not so little kiddos band together to help in whatever ways are needed to help their sister and their parents make sure that their sister gets the care that she needs to get better.  I’m so thankful for my husband who reads just about every medical study published on the disease and helps me understand and ask the right questions.  I’m especially grateful that he supported me in taking my girls to the National Institute of Health this summer to meet with the top team of myositis doctors in the Nation so that we could learn more about her disease and hopefully help others, too.

Most of the time I feel so busy, doing.  Fighting.  But I also feel a tremendous amount of guilt so much of the time.  There’s so many what ifs.  What if I hadn’t let her stay out in the sun as much as I did that summer that she got sick?  What if I passed along the gene that she has that is the “genetic proponent”?  What if I’m not doing enough?

cure jm

Since returning from NIH, I’ve felt very strongly that one of the things that I could DO, is help raise awareness about her juvenile dermatomyositis, and funds for research, too.  If you’d like to help, you can donate to the Cure JM Foundation.  It’s a non-profit whose primary goal is finding a cure for juvenile myositis.  Help my daughter get a cure.  It’s our prayer.

Comments

  1. 1

    JoeyfromSC says

    Wow, I’m so sorry she has to go through all of that!! I know it’s hard not to feel the guilt, but know that it’s not your fault…That’s great the other kids help out!

  2. 17

    says

    I suspect it’s a toss-up whether she got her incredible strength from you or vice versa, but either way you are two amazing women, and I’m truly sorry that your daughter has to know this pain as you all discover these new strengths, but I know that together your family will find your way this and come out even stronger.

    Holding you all close in my heart. xox

  3. 19

    says

    I’m sorry that all of you are having to go through this and I hope that one day this will all be behind you. Nothing but a mere memory.
    Together as a family you will get through this and don’t feel guilty (I know it’s hard) about this… you’re a great mom and there are so many things that are out of our control. It’s not your fault.
    We’re all here to support you!

  4. 28

    says

    I can only imagine what it’s like…for her, for you, for the rest of the family. I am so sorry any of you have to deal with that, but I am happy that you guys are all banding together and learning from this. I think about you guys often!!

  5. 38

    says

    That little girl is gorgeous inside and out. It’s such a helpless (self blaming) feeling when our kids endure something we have such little control over. I love how proactive you are in your efforts to find a cure for this. I hope anyone reading this clicks over the Cure JM Foundation to learn more!

  6. 42

    says

    Thank you for sharing what you’re going through and educating a lot of people about a disease that most people haven’t heard of. As a parent, one of the hardest things ever is when your child is sick and you can’t fix it. Big hugs to you and your family.

  7. 46

    says

    Wow! What an incredibly difficult thing for you and your daughter. I have never heard of this either. Thank you for sharing. I am glad that your family is coming together to support each other through this. Hugs to you and your sweet daughter.

  8. 48

    says

    She is resilient because of how she is being raised. Sure, some of it is innate, but more of it comes from her parents. You’re teaching them all the same thing: family is first and those around us who are hurting deserve our thoughts and care. At the start of each month I think of your family and how that visit went. And I pray. I pray that there is some breatkthrough soon.

  9. 50

    wendy goldstein says

    Kids are so strong!
    I have heard of JM and have donated to Kevin McKeever’s plea for help every year.
    Always Home and Uncool’s daughter has JM also.

    If you don’t know Kevin, Angie – you should!
    He was one of the ‘old school’ bloggers like us!

    I will introduce you two on Facebook.

    Praying for your daughter and all kids who suffer

    Wendy

  10. 52

    says

    Wow – I had never heard of JM before. So sorry your precious daughter has to deal with it – your daughter is amazingly strong like you are, and both of you are absolutely beautiful inside and out. I love how the other kids band together and help out – which only proves you’re a great mom, in spite of your self doubts. 😉 Like Mama Kat said, I hope anyone reading clicks over to the Cure JM Foundation to learn more – I’m on my way now! 🙂

  11. 57

    Sissy says

    Well written! Our daughter has been battling JDM for 8 years and like yours she is the most brave, inspirational 12 year old I know…Thank you for raising awareness! Research is desperately needed in this area. Until there is a cure we will continue to fight! Blessings, Sissy – Kory’s mom dx 2005 @4 yrs old

  12. 59

    Rachelle Brancato says

    Watching her struggle with this is heartbreaking, but knowing how strong-willed and courageous she is brings a smile to my heart! She has the best support system at home, her family! And, I personally know what an amazing mom she has because she’s my sister too! I hope that other readers will click on the link to Cure JM Foundation and learn more about the disease.

    Love you, Angie! xoxo

  13. 78

    Stephanie says

    Angie,

    I’m so sorry for your daughter and your family for having to go through this. I had JDM as a child. It was awful. I practically lived in the hospital and was mostly home schooled when I was 11. I was one of the lucky ones, though, who only had one flare up. My disease went into remission about a year and half after diagnosis. I hope your daughter is doing well and gets better soon. She will grow tremendously from this experience. I also wish all your family members the best (I know this is just as hard on them as it is her).

  14. 92

    Cheryl T. says

    I’m so sorry your daughter has to endure this. I have adult dermatomyositis and, like you, never heard of it until diagnosis. My DM is fairly under control. I never quite get the skin rash to completely go into remission but I have hope! Bless you and your family and I hope your daughter reaches remission!

    • 93

      Angie says

      Cheryl,
      I hope you reach remission, too. Not a fun journey at all. THANK YOU for taking the time to comment and show your support. Means so much!

    • 95

      Angie says

      We are so excited about putting together the duct tape sets for the kids at the hospital! THANK you for your donation!!!!

  15. 96

    says

    Thank you from another JM family for raising awareness for this terrible disease. I had never heard of Juvenile Dermatomyositis until my grandson was diagnosed almost 7 years ago. He was 5 at the time and all of a sudden couldn’t do the everyday things he had done in the past. His case was severe in the beginning with choking issues and not being able to lift his head up off the bed. Several hospitalizations, many, many IV treatments and years of awful medications. I can now say that he is finally in remission. There is a light at the end of the table. I know the first year is the hardest while you all adjust to your “new normal”. I will keep you and your daughter in my thoughts and prayers as you fight this battle.

  16. 103

    kristin says

    Can’t imagine the feelings of helplessness watching your child suffer. Our prayers and thoughts are with you. We’ll donate to find the cure!

    • 104

      Angie says

      Kristin,
      I’ve appreciated your support so much. THANK YOU. It’s nice knowing there are people / family around that you can talk to!

  17. 105

    Heather says

    My 4 yr old daughter was diagnosed with JM on May 9th of this year. Up until then, we had never heard of it. The doctors think she actually came down with it 6-12 months before she was diagnosed. My daughter has been a true trooper throughout this whole ordeal. Prayers for you and your family.

    -Heather

    • 106

      Angie says

      Heather,
      We think our daughter had it for at least 6 months before she was officially diagnosed, too. Sending your daughter our prayers and support and she battles on!!! HUGS!

  18. 127

    Sandy says

    It is truely amazing how very strong our children are! My thoughts and prayers are with your family. My daughter has battled an autoimmune disorder for the last 14 years, and so much of what you said sounded just like our situation. My daughter did not want people to know about her ilness, she just wanted to be “normal”. Unfortunately if she wasn’t around us people had to be made aware of her condition and how to handle it. If I could give anyone advice who was facing something similiar it is to believe in yourself to know what is best for your child, to not stop fighting to find a treatment or cure that will work. I have had doctors tell me that I had to pick the poison to put my child on…. NO, I kept searching and searching, seeing doctor after doctor. I didn’t know if I would see the day that my daughter would be able to go away to college and lead that “normal” life she wanted so desperately. I am so proud to tell you my daughter will be graduating college this year, we found a drug combination that worked and she went into remission. Though her condition did flare again, she is living virtually symptom free. I know how difficult things must be at the moment, but believe you will get through this and your daughter and family will be stronger because of it. Health and happiness to you all….

    • 128

      Angie says

      Sandy! THANK you for this wonderful advice, and BIG hugs to your and your daughter as your continue to be an advocate for her health!! HUGS!

  19. 129

    Connie says

    My daughter was 8 when she was diagnosed with dermatomyositis. She started having trouble riding her bike, climbing stairs, getting up off the floor, trouble in gym class, etc. She had an overall body rash for a short time that we didn’t think was serious. It took a doctor a year to believe me when I said there was something wrong and that it wasn’t in my head. We were referred to a pediatrician, then a neurologist, and finally a rheumatologist who was able to diagnose her. By then she was having trouble swallowing without it coming out her nose or going into her lungs and her hands looked like she was 80 not 8. Her wonderful doctor in Missoula MT along with her physical therapist prescribed meds and exercises that were awful for her but she learned to swallow pills and worked her butt for two hours everyday before school. When the pills weren’t enough she learned to give herself injections. Her little friends (or their parents) were afraid they would catch what she had and wouldn’t play with her anymore. She made new friends at MDA Summer Camp (life long friends). After 5 long years her doctor announced she was clinically cured! She is now 28, married with 2 littles of her own and I still worry about her, but she doesn’t have any more symptoms. She has had some residual problems from some of the meds she was on, but nothing she hasn’t been able to handle. I am so proud of her! When you said your daughter was more mature and caring, it reminds me all over again how our family grew and changed. My boys, husband and I volunteered for years at Montana MDA camp and my daughter did too, once she got a clean bill of health. They all have such compassion for others that just amazes me. It was certainly no picnic to go through this and I pray that your family also experiences the healing and closeness that my family did.

  20. 164

    says

    I’ve never heard of this before and I’m so sorry that your daughter has to go through all that she has been and will go through. She is admirable as you all are. Try not to blame yourself, though I know that’s a hard sell. You’re doing your best for her and your family. Love hearing how your whole family is just coming together and getting closer moreso than they already have and are.

    Hospitals are just no fun and I remember my almost 3 year old having to be in the hospital and doing activities / crafts with her was a great way to keep her busy and lift her spirits.

    {HUGS} all around! Let me know how I can help. My niece loves DUCT Tape crafting so I would be happy to send some over!

  21. 175

    Hannah Snider says

    i am doing a research paper about auto immune disease’s (since i already have two i thought i would inform people about it since very few people about it…and i stumbled on your and i was reading, i know how exactly how your daughter feels, i was diagnosed with dermatomyositis when i was around 9 was told i wasnt to live past 15 and now im 21 and its remission and will keeping your daughter in my prayers

  22. 194

    says

    Hi Friend, I went back and re-read this article last night. So touching. Happy to help in any way I can. Just message me if there’s anything I can do or if there are any events where you want a little extra help. Love ya.

  23. 202

    Deb W says

    Thanks for writing this. My daughter was diagnosed with dermatomyositis in August. It was caught early and she is responding well to treatments, but it has been a hard journey. She’s disappointed that she can’t compete in the Thanksgiving 5K or go for her purple belt in karate… things I know she will be able to do in the future, but for her, it hurts to see everyone else doing what she can’t. The daily medicines, the weekly shot, the monthly trip to the specialist… it’s overwhelming.
    Hope your daughter feels a lot better soon!

  24. 203

    Denise says

    My best friend is suffering from this as an adult. She has a lot of calcinosis bumps over her entire body. The doctors don’t know what to do. I see your child gets treatment from the hospital. Can you share what they do? Perhaps it can help my BFF? Any info we can pass along to her doctor would be GREAT!

  25. 204

    says

    Hi. I had this as a child, and still suffer some of the effects now, so I know a little about what your daughter is going through. There are so many hard things. The pain. Being different. Not being able to do the things other kids can do. But it does get better.

  26. 216

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  27. 217

    Heather says

    Hello, my name is Heather and I just happened to stumble onto your page during a web search…About 7 months ago my 4 yr old daughter was diagnosed with Dermatomyositis. Up until then, we had never heard of this disease. Boy, have we learned fast. I was reading through your post and saw your daughter is doing Ivig treatments. My daughter just had her first one this week. Up until now the Drs. have been trying to control it with prednisone and methotrexate. Those were not helping the rash, which was getting worse, so now we are trying the Ivig. I was wondering, after your daughter’s initial treatment how long was it before you seen and improvement, if any, in her rash or after how many treatments?

    I was also wondering if you knew the official ribbon color(s) that are being used for Dermatomyositis? My son would like to get a ribbon tattoo in honor of his little sister.

    Thanks for your help. All my best to your family.

  28. 238

    Stephanie Allin says

    My 14 year old daughter was diagnosed last month with dermatomyositis. We had never heard of it. But we were so relieved to FINALLY get a diagnosis after months of doctor visits and even more blood work & tests… My daughter feels like a pincushion 🙁 She started intense treatment immediately after being diagnosed in Atlanta, GA and is on the road to recovery. I don’t think I have ever prayed this much in my life. What a journey.. Thank you for posting. Its nice to know we are not alone in this fight and other families understand what we are going through.
    Blessings,
    Allin family

    • 239

      says

      Stephanie,
      I’m so happy to hear this. For me, one of the hardest parts was the NOT knowing, and waiting to get in for the initial appointment with the pediatric rheumatologist. Good luck to your daughter. Have you set up a 504 plan for her? Might be helpful if you haven’t.

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