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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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Skin Diaries This is Brave

This is Brave: Eric Martin

It all started in 2011 with a stubborn scab-like spot on my back. I ignored it thinking it would go away on its own, but after it started to change colors and even bleed I decided to see a dermatologist. While in the waiting room, I was surrounded by posters of melanoma. It looked just like the mark on my back. Before the doctor had even said a word, I knew I had it.

“Am I going to die? What’s going to happen? What’s next?”

Up to this point in my life, I had never really been to a doctor before. I’d never even broken a bone! I was confused and scared. Even more so when my oncologist told me I had a 50/50 shot. Thankfully, my response was to have faith and put my game face on. I found a doctor who specialized in melanoma, Dr. Gregory Daniels at the University of California San Diego Moores Cancer Center.

Treatment started with surgery and adjuvant interferon, but it was soon discontinued when another lump was found with more melanoma. The cycle of surgery and interferon was repeated – but the reprieve was short lived. In August 2012, follow-up scans revealed 20 ‘relatively small’ tumors all over my liver. This time, surgery and interferon weren’t going to be enough. My doctor and I decided that the best bet was enrolling in a promising trial investigating tumor-infiltrating lymphocyte – or TIL therapy – at the National Institutes of Health with Dr. Steven Rosenberg. Some patients were seeing incredible results, which of course were not guaranteed.

At this point in my life – late 2011 – the stakes seemed higher than ever. My wife just found out she was pregnant with our first child which would be my second. Luckily, the TIL therapy worked. In fact, it was considered a “complete response,” meaning that I wasn’t necessarily cured, but signs of cancer had disappeared. It was a great year for me. My beautiful son was born, I was cancer-free, and things started to look up. Then, three green dots appeared on my right pectoral.

Immediately, I started a second clinical trial examining the experimental combination of nivolumab + ipilimumab. After my first infusion of ipilimumab, I landed in the hospital. The side effects of the immunotherapy were so extreme that I had to drop the ipilimumab altogether. Nivolumab and surgery kept the tumors at bay, but eventually, the spots came back. Tumors were now visible under my skin, and biopsies confirmed, every single one was melanoma.

I started interleukin-2 (IL-2) and over two sessions had 50-60 doses of the medication infused into my bloodstream. Once again, the side effects brought on by activating the immune system reared their ugly head. In all honesty, I wanted to die. It was horrible – easily the worst treatment I’ve ever gone through. I had every side effect that they warn you about. What’s worse, it was all for nothing. The IL-2 didn’t work.

The next two clinical trials I enrolled in were based on vaccines that were injected into my tumors. We saw some results, but the tumors continued to grow. We then tried Keytruda by itself, but after six doses the tumors still continued to grow. At this point, Dr. Daniels had run out of trials to enroll me in, but I was determined not to give up or lose hope.

In late 2017, I tried a new approach and a new clinic three hours north of San Diego, Dr. Omid Hamid at The Angeles Clinic. I’ve been through two clinical trials with Dr. Hamid now and our battle to keep my tumors at bay seems never-ending. But there is a silver lining. My experience motivated me to start my own prevention-focused non-profit organization called Stage FREE Melanoma. I don’t want people to have a story like mine. I want to make a difference. Stage 1 stories are so much easier. If we make early detection easy, fewer people will reach an advanced stage of cancer.

In 2019, we’re launching our mobile dermatology bus to offer free skin screenings and education on melanoma prevention at local parks and beaches in Southern California. We had an amazing “Build the Bus 5K” to raise funds to outfit the bus and get started. It’s going to be a great year for early detection and prevention!

People ask me how I stay positive after nearly a decade of trials and surgeries. I have faith. I know that researchers across the globe are working every day to crack the code and find a treatment that will work. Even if they haven’t beaten my cancer, clinical trials have kept me alive. After nine clinical trials, ten surgeries and more infusions than I can count—I’m still here, eight years after being diagnosed with melanoma. I’ve had ups and downs and have tried practically every FDA-approved therapy for melanoma – but the crux of my story, which all readers need to understand, is that my fight isn’t yet finished. I’m still searching for my silver bullet and the elusive letters N.E.D. (no evidence of disease). In the meantime, I have no intention of letting melanoma get in the way of life. I have faith and I’m going to put it to good use.

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