everyone has their own story, this is just my own
March 18th is World Juvenile Arthritis Day and some of you may be wondering what that even means... YES! Kids get arthritis too. There's actually about 300,000 kids with Juvenile Arthritis in the United States, it's more common than you think.
To be honest, my mind has been flooded by thoughts about the COVID-19 pandemic, but still wanted to share information about Juvenile Arthritis to shed some light on why this virus is even more scary for those with a JA diagnosis. By now the news has affected almost everyone in the United States in some way; whether that be from travel, grocery store shortages, online teaching and work, and the heightened level of anxiety that has risen in our society. These are just the surface level issues we are facing, let alone the issues that us immunocompromised are facing during these scary times.
Last week was my spring break for college. I was set to be in Amsterdam, Netherlands for the week but as news spread that the virus had made its way to Europe, we made the executive decision to cancel our plans and stay within the U.S. to avoid planes all together. At first I was bummed as it would have been my first trip to Europe, but health is more important. Thankfully we made the right decision. While on our road trip, things started picking up in the United States. The president imposed a 30 day travel ban to Europe at the same time we would have been there. I ended up taking a road trip to Georgia and South Carolina for a week with my best friend. Throughout the trip, the more we heard everyone on the street talking about the virus and it was being covered by every news channel 24/7. This was about five days ago. The world started to panic and I could feel myself getting more anxious as the days passed, so we decided to wrap up the trip. I just wanted to be in my own bed in the safety of my sanitized home. Hopefully we did everything right using hand sanitizer after touching literally anything! LOL.
I have polyarticular juvenile idiopathic arthritis, otherwise known as JIA for short. This is the most common form of JA, but there are many other forms. To break this long phrase down..
Polyarticular - affecting five or more joints during the first six months
Juvenile - the diagnosis was prior to the age of 18
Arthritis - painful inflammation and stiffness of joints
JIA is an autoimmune disease meaning my immune system essentially attacks my joints because it thinks they are 'foreign invaders' or something… at least that's how my doctor explained it to me when I was diagnosed at age 8. My symptoms began with a lot of swelling, pain, and minimal range of motion. I started limping, not being able to hold my toothbrush, or open anything out of my lunchbox. I was fortunate enough to go to a private school where my teacher would allow me to tell her which answer to bubble on tests, because I couldn't hold a pencil. My parents took me to my pediatrician who ran blood work and said that I was ‘fine’. They were not accepting of that answer because they saw their previously active daughter, no longer able to make a fist. I had chronic sinus problems from the time I was two. Luckily having a phenomenal allergy/asthma/sinus doctor came in handy. He took one look at me and said “you need to see a rheumatologist.” After driving two hours for the closest pediatric rheumatologist appointment, x-rays, and extensive blood work.. we got a diagnosis of JIA.
The course of treatment for juvenile arthritis is commonly a category of drugs called biologics. These are medications that have been genetically engineered from living organisms using biotechnology. There are multiple different categories of biologics that focus on specific parts of the immune system to control inflammation. TNF blockers, interleukin blockers, B-cell inhibitors, and JAK inhibitors are some to name a few. All of the biologics I have been on, Humira, Enbrel, and Remicade, have been under the TNF blocker category. TNF blockers work by blocking a chemical that my body makes which causes the inflammation of my joints to occur. It's also common to be on low dose chemotherapy, such as methotrexate, in conjunction with biologics to make it less likely to build up a resistance to the drug. Chemotherapy honestly sucks to say the least.. I experienced a lot of nausea and heightened sensitivity to smells.
I originally started on Humira in conjunction with Methotrexate after my diagnosis. Humira worked really well causing me to go into remission (symptom free) for nine years until my body built up a resistance to the drug. This resulted in a flare my senior year of high school. My arthritis was active again for the first time in years. I switched to Enbrel because it was the next TNF blocker in line after Humira. I was on Enbrel for a year before switching to Remicade. Humira and Enbrel are injections that must be received intramuscular (in the thigh or stomach muscle) either every one or two weeks. When I switched to Remicade this was the first infusion I had ever been on. Remicade is different from the others because it is administered through an IV every eight weeks. I decided to switch to Remicade when I was going away to college because I didn't want to worry about how I was going to get a shot every week or two weeks. I never learned how to give myself the injections because they are quite painful, so my mom was graced with that responsibility for 10 or so years. I've been on Remicade for about five years now and my arthritis is overall doing pretty well with the exception of my thumb and some dislocating and cracking joints. However, the real kicker being on Remicade for myself has been all of the side effects of having my immune system suppressed.
I've been hospitalized four times over the past two years for upper kidney infections and had to receive IV antibiotics for treatment. I had a root canal done last year which caused me to develop an infection and abscess in my jaw which resulted in numerous rounds of antibiotics and took a year to finally be resolved. Having a suppressed immune system can make it easier to develop infections in the first place as well as make it more difficult to fight them off once in the body. For example, a common cold that is going around school could last a week for someone with a healthy immune system however for someone on these biologics, it could take weeks to get over the same cold. This is why it could be harder to fight off the COVID-19 virus if we were to catch it. Practicing social distancing for us immunocompromised is extremely important because we are more susceptible to catching anything. My intention is not to scare anyone with this information. My hope is by sharing my experience with JIA, that it will someday help another little boy or girl going through this to not feel alone.
There have been a lot of positive experiences that have come along with this major life change. My parents became involved with the Arthritis Foundation shortly after my diagnosis to learn what they could from others also going through this. The Arthritis Foundation puts on yearly fundraisers such as the Arthritis Walk, Magic of Caring fashion show, and JA conferences during the summer which are held in a different state every year. Fundraising for new medication research is essential for those who have already tried all of the medications without finding relief. Over the past 14 years, Team Marisa has raised approximately $60,000 for research and funding. I have also had the opportunity to be a spokesperson by doing news and radio interviews as well as advocating for the legislature in both the Florida State Capitol and Capitol of the United States in and Washington D.C. Once I got older and didn't want to walk in the fashion show, I was able to put my makeup skills to work and do the makeup for all of the models. I went to about five JA conventions in different states where I could meet kids with arthritis and my parents were able to meet parents of kids with arthritis. I made a handful of friends from these conventions and still keep in contact with some of them. New information would come out about treatment options. Doctors and fellow JA warriors would hold sessions about their expertise. I highly encourage anyone diagnosed with JA to get involved wherever you can. A sense of community is essential to not feeling isolated.
Thank you for taking time out of your day to learn a bit about Juvenile Arthritis.
Sending love, light, and healing energy to you all!