Zamya-
My name is Zamya Sumling, and I wanted to take a moment to share my journey with juvenile dermatomyositis (JDM) and my passion for advocacy within the community.
I was diagnosed with JDM at eight-years-old after experiencing skin rashes and muscle weakness, that were initially misdiagnosed as eczema and growing pains. Over the years, I’ve faced significant challenges, including hair thinning, weight gain, joint contractures, loss of mobility (full-time wheelchair user for 4 years), and social isolation. I underwent intensive treatment after traveling to the NIH for a treatment plan and was on a long-term steroid treatment and other medications. I am no longer on steroids, but am still on medications including Subcutaneous Immunoglobulin (SCIG), though I have yet to reach remission.
Now, at 21 years old, I am a senior graduating in May with plans to become a Child Life Specialist, inspired by those who supported me during my hospital stays. I am also passionate about advocating for children with JDM, particularly Black children, as I struggled to find representation and connection within the community when I was younger. I hope to use my experiences to be a role model and support system for others. Showing that JDM does not stop you from succeeding and getting a higher education. I do my own subcutaneous infusion while being a full-time student. I have had three leadership roles, including a sorority chaplain, NPHC academic chair, and president of a gospel choir while earning Dean’s list for five semesters.
Kiana-
My name is Kiana Pomerenke and I was diagnosed with JDM when I was 11 years old. I first went to the doctors when I noticed my fingers and toes going purple in the cold. After getting referred to a rheumatologist for Raynaud’s, they noticed a heliotrope rash on my joints and ran blood tests. A month later, I officially got diagnosed. My disease progressed slowly at the start, so my treatment was non-invasive. After starting high school I began to experience muscle weakness, severe, lingering rashes, and severe fatigue. My disease began to no longer respond to treatment and I’ve cycled through countless different infusions and injections. After countless hospital trips and months off of school I am happy to say I have recently gone into remission! I’ve returned to school, continued my sports, and will be starting nursing school next semester!
Zaliyah-
Zaliyah Drummond was diagnosed with juvenile dermatomyositis May of 2023. She was only four-years-old. Zaliyah symptoms started with face rashes and muscle weakness. For the longest time, doctors could not figure out what was wrong with her. It wasn’t until she ended up being bed bound and could not walk now that a diagnosis came. Zaliyah is six now and she is doing better than ever! She is able to walk and run and do the normal things that a six-year-old should be doing.
Kamila-
Kamila was diagnosed with JM in September 2024. Before that, we went to many doctors, but no one knew what was wrong. Then, we saw a specialist who figured it out. Kamila was having trouble moving, felt weak, and had a rash. Her muscles hurt, and it was hard for her to get out of bed. She fell down a lot.
Kamila had to stay in the hospital for four days to get tests and treatment. She started taking three different medicines, and she got shots every week. She also received and still gets IVIG every month now, after we were told “no” many times.
It has been a hard journey, but things are better now. Kamila can run and ride her bike—things she couldn’t do before. We are so happy to see her feeling like herself again!
Rhylie-
Imagine a child watching with envy while other kids do things that they can’t do. Imagine missing out on a normal childhood because of hospital visits, treatments, and side effects. Imagine living in fear of the sun. That’s been Rhylie’s reality. Rhylie was diagnosed at the age of two with juvenile dermatomyositis.
In some cases, swallowing and breathing can be affected, stiff and swollen joints can occur, and Rhylie experiences this sometimes. Rhylie developed a contracture which is a shortened muscle that causes a joint to remain in a bent position that causes her to not be able to walk. Rhylie also had calcium deposits that developed under her skin due to severe muscle damage. Since the condition has no cure she receives treatments to prevent her from losing her mobility once a month with no expected date of when she will completely be finished. We are in year 11 of treatment. Doctors had gotten her disease under control, but her condition flared in 2019 and recently flared again in 2024. She is currently receiving IVIG as a treatment for her juvenile dermatomyositis. With all the different medications and the disease itself she has developed Type 2 diabetes and a lung disease called Bronchiectasis. She has to wear a cpt vest to clear mucus from her airways in her lungs. The doctor refers to her overall conditions as her body is writing history itself with no explanation and that she may be one of the children who will remain on treatments for the rest of her life. Throughout it all you will always see this angel smiling. She’s braver than we believe, stronger than she seems, smarter than we think, and twice as beautiful as we’d imagine. God made her beautiful.
Aiyana-
At 8 years old I was diagnosed with Juvenile Dermatomyositis, Rheumatoid Arthritis, and Raynaud’s. Healing the trauma of a life changing diagnosis has been my biggest barrier. I lacked connection with my peers, I felt isolated, and I had a hard time adjusting to frequent doctor visits, daily medications, weekly treatments, and performing daily tasks.
Today, I’ve adopted healthy habits like advocating for my health, seeking emotional help, educating my peers, and participating in volunteer groups. I love to work out, hike, cook, travel, and spend time with loved ones. Taking action on my health has played the biggest role in my motivation to stay active. I’ve accepted and learned to work with chronic illness while maintaining hope.
Khloe-
My name is Annalisa Sopher and I have an 8 year old daughter named Khloe with JDM. I would like to share her story for rare disease month.
My daughter Khloe was diagnosed with JDM September 1, 2023 at the age of 6. She had a rash that wouldn’t go away for six months. She also developed muscle weakness and pain in her legs and struggled to get out of bed, walk long distances, and run. After countless appointments with her pediatrician and a few specialists her dermatologist told us about JDM and contacted her pediatrician to get a referral to rheumatology.
She was admitted the day she got the diagnosis and had her baseline tests done which showed she had inflammation in her leg muscles and elevated labs. Therefore, she was started on steroids and methotrexate. Her pain was improving, but her skin didn’t, so after a few months her doctor added IVIG to her plan. It’s been a hard journey for her but we’re thrilled that she’s no longer on steroids or methotrexate. She achieved medicated remission and now maintains this with IVIG infusions monthly. She’s strong again, dancing two days a week, running with her classmates, and her skin has healed. She has showed me just how resilient children can be and I’m so proud of her.
Ezra-
My little JDM warrior’s name is Ezra. He was diagnosed at age 3.5 and he is now 5. His journey started with the loss of mobility and skin involvement as well. We were admitted to Children’s Hospital of Orange County and stayed for a week running multiple tests and labs until diagnosed. He went home with five medications and IVIG treatments every 4 weeks.
Thanks to Cure JM I was able to see that he was not alone. We joined the Walk Strong 2024 event, where he got to feel so special; it was all about him. We are enrolled for 2025 as well. We have had a few scares and have had to visit emergency rooms a few times, but after tests and labs were sent home. He is now only on two medications and still receives IVIG every six weeks, which might be changing back to every 4 weeks. Some days are good and others not so much. Ezra has a big personality and he is a brave little man! Nothing is holding him back; he truly a warrior in my eyes!
Alissa-
Alissa Weisman was a boisterous healthy two-year-old when she was felled by juvenile dermatomyositis. Her story from there followed a well-worn path: A brush with death after a rapid decline, a long slog back to a relatively normal childhood, then brutal relapses in her teenage years that weakened her muscles and self-esteem and damaged her digestive tract so badly that she slipped into anorexia. There was the constant cycle of medications, dose changes, infusions and doctors’ appointments that any Cure JM parent would recognize.
Then after Alissa went to college, she decided to get healthy – if not cured. She took up power lifting to build back muscle mass that had deteriorated over years of inflammation. She focused on areas of her body ravaged by calcinosis. She began mountaineering and serious backpacking, climbing peaks over 14,000 feet. And she challenged her doctors to understand juvenile dermatomyositis in a more holistic way, to treat her health, not just her disease.
Alissa still has JDM, still continues a regimen of immunosuppressants and, far less frequently, infusions of immunoglobulin, but she is healthier and happier than she has been since that diagnosis came at age two. And she would like all JDM kids know they have far more control over their lives than they might be led to believe.
Aspen-
Hello, My name is Ashley Kinsey, and I am reaching out on behalf of my brave daughter, Aspen Dean, who is 11 years old and was diagnosed 9 months ago. She has shown incredible strength since her diagnosis, and we hope you will consider us for this opportunity. We would also be thrilled to collaborate with your organization through public speaking engagements, volunteer activities, walks, and any other opportunities that may arise. Since learning about her diagnosis, Aspen has been working on her platform, AddyCaresForRares, and she is eager to advocate for children with rare disease.
Last year, I competed in my very first pageant. It was an exciting and magical experience, and I couldn’t wait for the next one. I started preparing, but then something unexpected happened. Little bumps appeared on my hands, I felt extremely tired all the time and I began to lose my hair. My parents took me to the doctor, and after weeks of testing , I was diagnosed with a rare autoimmune disease called juvenile dermatomyositis, or JDM.
Receiving my diagnosis felt like a huge weight had been placed on my shoulders. I had to see many doctors, undergo numerous blood tests, and start infusion therapy. But through this journey, I’ve learned that no matter what’s happening inside my body, I must keep moving forward. I might have a few scars and some facial swelling from treatments, but standing before you today, I know that I am still beautiful, inside and out.
This experience has taught me the true meaning of strength and resilience. It’s not about never facing challenges; it’s about how you rise above them. With determination and self-belief, you can overcome any obstacle.
Kadalyna-
This is Kadalyna Flora. Kadalyna who was diagnosed with JDM in the summer of 2024. She is 10 years old and underwent an aggressive treatment plan including many infusions, labs, and shots. This little warrior pulled through and her levels are now back to normal range. Her recent MRI showed no evidence of myositis! She is currently still on autoimmune suppressants and will hopefully continue down the path of remission.
