Kasia-
It’s been 9 years since my girl was first diagnosed with JM. She was just 7 years old. The first 3 years were extremely hard on her: having multiple flare ups, the first making her unable to walk on her own, and extremely high doses of meds that just tore her up physically and, honestly, mentally. Those shaped her into the person she is now with a never quit attitude and always working hard, because that’s what it took for her to get back on her feet, literally.
Then came the big flare up her freshman year, after a short bout of Covid, taking her out of sports and small things people overlook: like dances, walking down the hall to make it to her class on time with a school bag, white Wednesday shenanigans, walking up bleachers at a football game, and basically anything that required her to use her legs a lot. Or the other side too of having to stay caught up at school through zoom while missing weeks at a time and intermittent days after that for her infusions…all while maintaining straight A’s. Or having to start from ground zero, AGAIN, in her real love of her life: softball.
There are so many who don’t know her story and don’t understand the mental toughness and fight inside of her. So many that don’t know the daily struggle of working so hard at the gym, in the cages, and on the field just to catch back up STILL.
This anniversary, my memories are not only crushing (bringing up all those memories and feelings again) but also an incredibly uplifting one as well to see what my daughter has grown and pushed through to be where she is now. I love her so much and pray for her continued medicinal remission from Juvenile Myositis. In fact, she’s just half a pill away from complete remission, finally, after 3 years! ~Katie
So next time you see this girl, just know she’s been through a lot in her life and I’ll bet she’s got more fight in her than you give her credit for. #kasiastrong So thankful for our family (I remember every single little thing y’all did for her and every single visit) and friends (that literally just sat by her side through this) and the teachers and coaches during her hardest times, who have stuck by her through this!
You can learn more about this extremely rare disease at www.curejm.org or just ask me. I will share this every year to create awareness and really just a better sense of empathy and understanding bc you don’t always know what people are going through.
Gretchen-
My name is Gretchen, 31 years old, Filipino-American, and I am a JM warrior. I currently live in the DC metro area and work as a school nurse for adolescents at a boarding school.
In 2008, I was 15 years old when I started developing my symptoms after making my school’s softball team. I was excited to be the only lefty on the junior varsity team and learn from my team and coach. My symptoms started off with fatigue, muscle weakness, and pain. Since I was a teenager, it was easy to consider mono as the diagnosis. My mom took me to numerous diagnostic appointments and doctors until we found Dr. Whelton at Georgetown University. With his help, we finally determined my diagnosis after two months of uncertainty. It took multiple admissions in the hospital, experimenting with treatments, and years to properly manage my disease. After a couple years my disease was finally in remission. Since then I’ve been able to do many activities I was told I wouldn’t be able to do such as dancing, running, play flag football, and more. I was also able to obtain two college degrees, one of them being in nursing. I’ve ran many races ranging from a fun holiday 5k to a city wide marathon. I’m also traveling around the world with my husband and enjoying resting and napping with my beagle.
Yes, my disease is still a part of me even though it’s in remission. I always prioritize being active and resting to ensure it stays that way. It was truly a journey and it still is.
Liam-
Liam Warr has been living with a diagnosis of JDM for 13 years now. His first symptoms appeared many years earlier, but were misdiagnosed; as is often the case for JDM kids. His treatments began at the age of 4 1/2 and although he never reached remission and is still taking his daily medications, he is living a beautiful and active life. Liam’s family have been an active fundraiser for Cure JM since his diagnosis in 2011, and held a run called Liam’s Run which raised over $8,000 for the organization. They participate each year in the Giving Tuesday challenges and have walked for Cure JM.
Liam turned 18 earlier this month and will be graduating from high school this May. He is looking forward to college in the fall, and will be transitioning from his Pediatric care of his Dermatomyositis into adult care in the fall as well.
Each step of the way Cure JM has been a big resource for his parents and his doctor who he has been with since he was 4 1/2. Although JDM drastically changed the trajectory of his life, he has developed more responsibility in managing his disease, learned how to advocate for himself at school and work, and has a level of empathy for others a lot of kids his age wouldn’t understand. JDM is something he will always have to manage, but it doesn’t define who he is and what he is capable of doing. The future is bright for this Rare Disease fighter!
Hannah-
I want to share some of my story in honor of Rare Disease Month. I was diagnosed with juvenile dermatomyositis in the summer of 2008, while on vacation with my family. I was five years old. After my diagnosis, I was started on heavy steroid treatment, IVIG, and chemo. I became extremely weak; a painful rash covered most of my body. At the start of that summer, I was an athletic kid who played almost every sport you could think of. By the end of the summer, I was confined to a wheelchair. I had lost the ability to walk, talk, move, and eat. Over the next few years, I had to learn how to do it all again. Because of my diagnosis and the intense treatment, I developed other health conditions over the years. In 2022, my JDM finally went into remission. It’s crazy to think that between 2008 and 2022, I have taken around 700 hundred chemo shots, around a thousand IVIG treatments, hundreds of steroid treatments, thousands of oral medications, 100 rounds of Subcutaneous IG, 68 surgeries, countless tests/procedures, and many physical/occupational therapy sessions.
It’s been 16 years since my diagnosis, and I have exceeded the expectations of my doctors. This month, I will be 21 years old. I am a junior at George Washington University studying Psychology and Criminal Justice. I am also currently training to run a 5k this summer. I share my story because when I was first diagnosed, I felt so alone. I didn’t know anyone else with JDM until 2018 when I found CureJM. This is why I share my story, so no one else feels alone because we are not alone. I won’t ever stop sharing my story until we find a cure.
Annie-
Annie was diagnosed with juvenile dermatomyositis in January of 2022 after several months of doctor-hopping and no real answers. By the grace of God, we fell into the hands of an orthopedic doctor who saw Annie and was finally able to connect the dots.
So let’s rewind, in the spring of 2021, after spending an afternoon at a baseball tournament, Annie developed a bright red rash across her cheeks. It wasn’t a typical rash, and continued to progress, despite numerous creams and lotions, and a trip to an allergist. During this time, Annie’s gross motor skills began backpedaling. She could no longer do things she once did, and certainly wasn’t behaving like a normal 2-year-old. She was very clumsy; the slightest bump would send her down. On top of that, she appeared to have no real core strength to help break the fall. Annie was left with many bumps and bruises. In a few short months, she had lost all ability to pull herself up. If toys were dropped, she’d ask me to pick them up for her. There was no running, little to no playing, and a constant need to be held. She just seemed sad and was truly struggling. My husband and I didn’t know where to turn. We were at the mercy of doctors who were completely unfamiliar with Annie’s condition. As her mom, and a mother to two other healthy children, I knew something was desperately wrong.
In December of 2021, Annie underwent anesthesia for an MRI of her brain at the request of a local neurologist. The findings were normal and the following month we were sent to a pediatric orthopedic doctor to discuss possible hip involvement. This doctor will forever hold a special place in my heart, because for the very first time, I felt seen and heard. He immediately sprang into action and discovered Annie’s diagnosis, juvenile dermatomyositis. Regardless of not really knowing what was in store for us, the relief I felt was immense because I finally had an answer and a course for treatment.
Annie was met at Children’s Healthcare of Atlanta by a team of rheumatologists who began a plan of action to get her well and as quickly as possible. A three-day hospital stay was filled with an additional MRI, steroid IVs, blood work, and her first round of IVIG. Before we were discharged, Annie was already showing signs of improvement. I was amazed and so incredibly thankful.
Today, we are just over 2 years into learning, growing, and figuring this thing out. It has truly been a whirlwind of emotions. Looking at Annie, one would never know what she has overcome. She appears to be your average 4-year-old girl. She started preschool in the fall and has made so many new friends. She loves playing with her babies, jumping on the trampoline, wrestling her two older brothers, and putting on all the make-up and jewelry. She is equal parts rough and tough and the girliest girly-girl. She is quite literally the epitome of joy.
Annie has been off steroids for over a year. She still receives IVIG infusions, though now spaced to every 2 months as well as a weekly injection. I remind her as often as I can of just how strong she is and that whatever she sets her mind to, can be done! The sky is the limit for my Annie-girl!
Boris-
In 2014, Boris was 4 years old. He had just started kindergarten and suddenly he started having pains and his walking became increasingly worse. After 3 months and multiple examinations in the hospital, he was diagnosed with Juvenile Dermatomyositis (a rare autoimmune disease). Boris left the hospital in a wheelchair. The treatment started immediately- Prednisolone and Methotrexate injections.
Fast forward to 2016, Boris’ 1st time at a CureJM conference in Florida. Because there are few children with JM in the Netherlands, we came across CureJM via the internet. It was a very special and valuable experience to visit the conference.
In 2020, after 6 years of medication, hospital visits and physiotherapy, Boris was in remission and he is doing very well.
In 2023, we went to a CureJM conference again, this time in Washington DC. Boris was now 13 years old and met peers, struggling with the same JM issues as he was (another valuable visit to the USA for us). At the moment he is doing very well medically, few residual symptoms of JM, but always alert for signals that could indicate a flare. Still hoping for a cure!
