Skin Diaries

Family Takes on Juvenile Dermatomyositis

When Juvenile Dermatomyositis (JDM) entered our lives, it hit us hard. JDM is a rare autoimmune disease in children that causes inflammation and swelling of the muscles and blood vessels under the skin. JDM makes exposure to UV rays more dangerous as the rays intensify rashes caused by the disease. About three in a million children in the US are diagnosed every year. My son Leo is one of them.

We started seeing symptoms of JDM this past summer. Leo first developed canker sores, then complained about soreness in his legs and a rash spread from his face to other parts of his body. As a parent, these symptoms were easy to associate with relatively harmless and easy to fix issues…growing pains, a change in laundry detergent or a reaction to chlorine. Todd is a nurse and didn’t see anything too alarming until the symptoms kept building.

Leo started having pain while eating and became fatigued with low-grade fevers. Thinking he may have a virus or mono, we brought him to our pediatrician who ran a series of labs. As we continued to rule out one thing after another, we moved to x-rays and ultrasounds. The results were unusual enough that our doctor immediately referred us to the University of California, San Francisco (UCSF).

Within a month, Leo couldn’t walk, stand up from a chair, get in and out of the car, or even get up and down from his bed. He had lost mobility and we were carrying our sweet seven-year-old boy everywhere. He slept most of the day and was severely dehydrated because he didn’t have the energy to eat or drink. Visually, his rashes were getting worse and he was sullen and pale. We were extremely worried and scared. Leo was our bounce-off-the-walls, sporty spice and his health was continuing to go downhill instead of improving.

A team of doctors including pediatricians, rheumatologists, infectious disease specialists, oncologists, pulmonologists and dermatologists at UCSF worked together for a solid week to discuss what could be wrong with Leo.

Then, July 31st, 2019 came, and we’ll never forget it. That day our team of doctors told us that our child, who had been perfectly healthy for seven years, suddenly had a rare and incurable disease. We were in complete shock. Nothing can prepare you for a diagnosis like that. Our lives changed the instant Juvenile Dermatomyositis was diagnosed.

As with many diseases, early detection and aggressive treatment lead to better outcomes. Leo started right away with high dose steroids, low dose chemotherapy and IVIG (Intravenous Immune Globulin). Because he was so young, we had to teach him how to swallow pills, take shots and tackle explaining the difference between a disease and a virus. We waded through our grief and started to adapt to his needs immediately.

Within two weeks, he was back in the hospital because the chemo drug, which we were administering at home, negatively affected his liver. Our rheumatologists recommended taking that out of his mix but adding two more serious chemo drugs which would be infusions. Unfortunately, these chemo drugs cannot be administered to anyone under 18 in our county. So every two weeks, Leo has had to travel five hours south to San Francisco for infusions.

Today, because of JDM, Leo’s immune system is constantly fighting his body’s own tissues and cells. He’s arthritic in 90% of his joints and his muscle weakness is obvious. He has the classic rash around his eyes (called heliotrope) and abnormal swelling and distortion of the blood vessels around the nail beds. JDM can involve organs also, and unfortunately, Leo’s team found nodules on his lungs making his diagnosis moderate or severe.

Leo not only suffers from extreme fatigue and pain from the disease but also a myriad of side effects from his treatments. He has mood swings, weight gain, indigestion, insomnia, anxiety, nausea and he, for now, he can’t participate in any competitive sports. Between the physical pain and the roller coaster of emotions, our seven-year-old is having to grasp a lot of things he never would have had to cope with otherwise. Leo is rebuilding his endurance and strength and we are hopeful that, with treatments and physical therapy, he will get back to living his best life.

Beyond caring for his body and heart, we worry about his future. The same medications that are fighting his JDM also may cause cataracts, calcifications, osteoporosis, early-onset diabetes, cancer, stunted growth, and infertility. One thing we can protect him against are UV rays which can make his physical symptoms SO much worse. We cover Leo in sunscreen and started using UPF 50+ clothing. We live on the coast and Leo loves the beach, so protecting him while trying to maintain his lifestyle is important.

Past, present and future, his battle is our battle and we face it together as a family. There is no rhyme or reason to this disease and there is no cause or cure, but that won’t get us down. JDM is going to realize we are a force to be reckoned with! Leo has taken it in stride and has taught us so much about strength, perseverance, resilience and bravery.

We are so thankful for our local pediatrician Dr. Sarah Poyen for taking us seriously and getting us out to a larger hospital quickly. And for Dr. Kim and Dr. Soulsby, our amazing rheumatologists, that are guiding us through the tunnel, UCSF Benioff Children’s Hospital and Infusion Center, and The Family House for being our home away from home.

JDM is considered an orphan disease, which means not enough of the population is diagnosed to interest the government to research a cure. All research is privately funded and spearheaded by families, providers, community members and CureJM. Leo is actively involved in a research study that is heavily funded by CureJM and CARRA (Childhood Arthritis and Rheumatology Research Alliance). We’re hopeful that this study will help researchers identify ways to detect, treat and prevent JDM.

Our request as parents and as part of the greater JDM community is for you to share Leo’s story and educate others about this rare disease. And if you’re able, please consider donating to www.curejm.com to help us find a cure for Leo and many other children like him!

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1 Comment

  • Mark Pankratz

    I’ve had DM for 11 years. I’ve been getting a IVIg every month for 11 years.
    After a few years my veins were getting so bad it was taking 2 -3 pokes to get the needle in with out blowing out the veins.
    I’m sure Leo knows how bad just one IV hurts. IV’s are no fun.

    I would advise Leo’s parents to consider having a port-a-cath instaled. It’s the best thing I’ve ever done for getting IVIg’s.
    It still hurts a little bit, but nothing like a IV, it’s more like a shot. If you have a good nurse, sometimes you barely feel it.

    There is a web support group called, “The Myositis Association”. There are some local support groups in different states.
    I think they are called KIT “Keep In Touch” support groups. And a national convention.

    Since JDM is so rare, It’s nice to know your not the only one with JDM.
    It’s very helpful to understand JDM better. Plus you can learn what works for others with JDM.
    So when you talk to your doctor, you know what your doctor is talking about, and you can ask your doctor informed questions

    Take Care
    Hang in there Leo
    Mark

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