Your Teen Ambassadors
Anna, Morgan and Samantha are three teens with Juvenile Dermatomyositis who want to share their experience with JM. They hope this will help make your battle with Juvenile Myositis a little bit easier.
First, get to know them a little by reading their stories.
I always knew I was different, but never imagined I was one-in-a-million.
I was diagnosed with Juvenile Dermatomyositis when I was 15, two weeks before I started 10th grade. I began having symptoms in 7th grade after participating on the track team in the high jump. I hurt my knee and had to go to see an orthopedist who diagnosed me with bursitis.
After that, I started having pain in my joints and I noticed my energy level was never the same. The pain worsened, with weakness in my upper arm muscles. Within three months it escalated to weakness over my entire body, joint pain and a rash on my elbows. Those three months were filled with different doctor’s appointments, MRI’s and confusion. I knew something was very wrong and yet the doctors did not seem to understand and kept trying to write it off as growing pains, though I had not grown in 3 years.
At the end of the three months, my mom and I went to Cabo San Lucas, Mexico. She thought it would be good for me to relax and get away from all the stress. Cabo in August is the hottest place ever, and if you know anything about JDM, you know that heat and sun are not what you want. Our trip was cut short when I got so sick that I could barely move.
We came home and went directly to a rheumatologist. He quickly diagnosed me and I have never felt such relief in my entire life. Sure, I had a life threatening disease, but I finally had an answer and treatment.
My doctor automatically started me on Methotrexate and Prednisone, which I am still on three years later. I was also prescribed a bunch of other meds (immunosuppressants) in addition to the Prednisone and Methotrexate, but I had bad reactions to everything until we tried Rituxan. Now, every four months I get two rounds of IV’s two weeks apart.
By the end of my senior year of high school, I was starting to feel almost like my old self again and now I am in my freshman year of college all the way on the other side of the country. This means I am in charge of my own meds, doctors and infusions. It is a challenge to make sure I do not push myself too hard while still having fun and taking in the college experience.
Life since being diagnosed has not been easy, but I have matured in countless ways over the past three years. Facing mortality at age 15 did that. Whereas I once saw this disease as a curse, I now see it as an opportunity for continued change and growth. I know it will be part of all that I accomplish in life.
My name is Morgan, and I am 17 years old. I am in my first year of college, as I graduated early from high school. I live in Florida, and I attend the state college near my house.
My story begins when I was 11 years old. Before I was diagnosed in June of 2010, I was a fairly normal kid. I was a cheerleader and had never had any major health issues aside from multiple broken bones caused by my clumsiness. Since I was a cheerleader I was very active and very fit. I was able to flip and twist through the air like no problem, and I never seemed to run out of energy.
This, however, began to change. I began getting very weak, and I wasn’t able to do all of my activities I used to do. I even started falling asleep on the couch at the gym.
Everyone believed that I was just having a mental block that came from my broken elbow a few months before. Why would you ever think that a normal 11 year old could have a very serious, very rare disease?
Now that we look back, everything adds up and makes sense with the diagnosis. All within 15 months, I developed a rash on my elbows and knees, and I was getting very weak. At the time, we just thought that the red patches on my joints were rug burn. I was also complaining of frequent headaches, stomachaches, and things of that nature. My mom believed that as a stubborn preteen I was making up my pains so I wouldn’t have to go to school.
After noticing I was at the doctor at least once a week, my pediatrician realized something was wrong. He recommended that we go see a dermatologist for my rash. So, in May of 2010, my mom took me to a dermatologist to look at the strange rash on my knees and elbows. The doctor believed that I had eczema and needed a biopsy to confirm the diagnosis and for the insurance to approve of treatment.
When they took the biopsy, and that was my first real experience with needles or doctors. We were all shocked when it the results came back as Juvenile Dermatomyositis. So on June 18th 2010, my world completely changed. Within the next few months, we went through the process of finding multiple doctors for each of my specific needs. I was put on prednisone right away, which gave me the wonderful ”moonface”. I started taking cellcept and various other medications. I started weekly infusions, which was a difficult thing to get used to considering I had spent very little time in hospitals. I was no longer able to tumble or cheer. I lost many of my friends because they didn’t understand what I was going through. I am very thankful that the disease never progressed to the point of me becoming wheelchair bound as some other JDM kids were.
I began to take horseback riding lessons as my replacement hobby in fall of 2010. I quickly caught on and haven’t looked back since. I found that this was an easier sport for me to keep up in physically. I had a wish granted from Make a Wish, and my only request was for a horse of my own. So in the fall of 2011, I got my very own horse called Emerson. Owning him gave me great responsibility as well as a safe haven to escape after a stressful day at school or the doctors. In the winter of 2012, we traded Emerson and got my current pony Riley. I love riding horses, and I hope I will always have an opportunity to do so. Riding horses introduced me into a whole new group of friends that I was able to keep up with when riding my horse.
I am still on a lot of medications five years later, but I am able to lead a full life. I did miss a LOT of school in high school, and some of that was due to complications from my IVIG. I have had aseptic meningitis three times, and that caused me some long absences from school. I wasn’t really all that into high school activities and would prefer to ride my horse, hang out with friends, or read, so I decided to graduate high school early. I did dual enrollment classes with the local college that allowed me to graduate high school and start college as a sophomore this year. As I said in the beginning, I am at a local college this year since I am so young, but next year, I am looking forward to transferring to either University of Tennessee, Auburn University, or the University of Florida.
I have also begun speaking on my patient experience, so far to hospital systems and doctors. In doing this, I hope that sharing my story can help someone else down the line have a better patient experience. I love being able to share my story with others if it can help them in some way. In some ways, I am grateful for being able to have these experiences to allow me to change and grow into the person I am today. Over the past five years, I think I have become much more mature than my peers, and I understand responsibility much more that some people my age. I have had to be very strong going through all of this, and it has also allowed me to share my story with others.
My name is Samantha Martin. I am a freshmen at the College
Preparatory School, located just outside San Francisco, CA.
My JDM journey began at the age of three. The specifics are a blur to me because I was so young. However, I can tell you what my parents have described about my symptoms, diagnosis and treatment. At first, when the rash and tiredness came, my parents thought I was being a fussy toddler. I begged to be carried across the field at my brother’s baseball games. I refused to walk up the stairs and threw temper tantrums. Climbing those stairs seemed like a simple action, but for a child with JDM, it was an insurmountable task.
Like many of you, I had a rash across my face and hands for which no doctor could find a cause. After six months of knowing something was wrong and getting worse, my parents took me to a Rheumatologist who diagnosed me immediately. I am forever grateful to them for their tenacity in not taking “no” for an answer and researching all possible avenues for treatment. I owe them my life. A two-year saga of cross-country doctor trips, shots, and infusions ensued.
Relief came with remission only to be dashed with two subsequent flares about two years apart.
Despite the physical tolls of JDM, I never let it conflict with the things I love in life. I play for my school’s varsity lacrosse team, sing, make music videos and write songs. People would tell you I live with a smile on my face. The most important thing to remember about this disease is that it should not define you; it’s just an obstacle. Don’t let it stop you from doing what you love.