Wilmington Teen Living with Juvenile Rheumatoid Arthritis

Macy is just like any other thirteen year old girl… She likes to hang out with her friends, go to the mall, play the violin and keyboard, listen to music and play basketball, softball, field hockey and soccer. What makes her different from most other teenagers is that she is living with Juvenile Rheumatoid Arthritis.

Macy always had aches and pains as a kid but I never thought much of it. She was a busy kid and was often times getting bumped and knocked around on the soccer field, basketball court, gymnastics mats and the playground. It wasn’t until sometime around her twelfth birthday that things started to seem a little strange.

After months of odd symptoms including swollen joints, intense pain, limited mobility and extreme exhaustion, her pediatrician and I realized there was something going on. We were referred to Dr. Laurie Miller, Rheumatologist at Tufts Floating Hospital for Children. After blood tests (15 tubes worth!), x-rays, ultrasounds and manual joint manipulation tests, we finally had a diagnosis. That's when our lives changed forever.  

Macy's official diagnosis is RF+ Polyarticular Juvenile Idiopathic Rheumatoid Arthritis (see #4 on page). RF+ is in reference to the level of inflammation in her body. Polyarticular means 5 or more joints are affected; in Macy's case, it is most of her joints. Juvenile meaning it started affecting her before she was 18. Idiopathic basically means that they don't understand why she has it. Rheumatoid means that it is auto-immune, or her body attacking itself (opposed to osteoarthritis arthritis, the other form of arthritis, which is caused by overuse or wear and tear). Arthritis is a disease affecting the joints and their movement.  

Immediately following her diagnosis, Macy was started on an NSAID (anti-inflammatory medication) and went through four of them before she decided which one was going to work best for her. She was eventually put on Prednisone (corticosteroid), Methotrexate (chemotherapy drug) and Enbrel (biologic therapy drug) to help control her flare ups and symptoms. Nausea from the Methotrexate called for Zofran (anti-nausea) and general stomach pains from all the medicines caused a need for Folic Acid (B vitamin). Eventually, all of the meds took such a toll on her stomach and she ended up in the ER. After high doses of antacids to get her through, she had a consultation with gastroenterology. They decided to put her on Omeprazole (proton pump inhibitor) as long as she is on all of her other meds, just to protect her stomach.

Macy has held up amazing well considering everything she has gone through. She currently takes 44 pills and gets 3 injections every week. She has to have her blood monitored monthly as the Methotrexate and Enbrel can affect her liver, lungs, kidneys and bone marrow. We have to be careful with her exposure to anyone who is sick or who has recently gotten a "live" vaccine (such as flu mist), as she has a weakened immune system due to the Methotrexate and Enbrel. She has been back and forth to the doctor more times than I can count. She has had flare ups in her hands, fingers, wrists, shoulders and knees, has been on crutches and has gone through more physical and occupational therapy than I care to remember! She has a 504 plan at school, has missed well over 20 days and is currently seeing an after school tutor to get her caught up in all that she has missed, and still, she is an Honor Student. She has missed out on sleepovers, after school activities and family events due to lack of energy, joint pain and exhaustion. She gave in to her arthritis for a while but has recently decided to take back control of her life.

Macy’s science class was given an assignment a few months back to research a disease and then give a presentation on it. Macy was hoping to see JRA on the list of diseases and was disappointed not to find it. I suggested she talk to her teacher, Mrs. Strazzere, about it and sure enough, she was more than happy to let Macy do it! That’s when Macy started to take back control in her life. Researching her disease, making a 15+ slide Power Point presentation, and educating her classmates on a topic that she fully understands gave her so much confidence.

While doing her research, Macy came across the Massachusetts Arthritis Foundation page, learned of the North Shore Walk on May 19 in Beverly and decided she wanted to participate. To date, our team, Team Macy, has more than 18 walkers, has raised almost $1,800.00 and has plans to do more fundraising before the walk. Macy is even the Youth Ambassador for the North Shore Walk!

The support that we have received from friends, family, friends of friends and the town of Wilmington so far has been tremendous! Support has even come from a handful of teachers at the Galvin Middle School in Wakefield! Amazing!

Macy was cast in a school play at the beginning of April and the drama teacher, Ms. Kole, allowed us to set up a table to raise donations for the walk and hand out information on arthritis and the Arthritis Foundation. We were able to raise close to $300 between on-site donations and donations raised from handing out flyers. We are also hoping to do fundraisers with a local pottery painting business, a local frozen yogurt shop and hope to have a table outside of our local Starbucks, all to raise funds and awareness. We are teaming up with Wilmington Youth Soccer Association and will be setting up a table with information on either May 11 or 18. Stay posted for details. All events will be posted as they are scheduled!

Living with arthritis for the rest of her life is not something I want for Macy, but it is her reality. Macy has taught me to look for a positive aspect in every situation. The positive in this situation is that I believe that arthritis has empowered Macy. She now has a platform on which to stand which has helped her realize the power she has within. Arthritis will always be a part of Macy, but it does not define who she is. 

Macy has been so strong and so brave through this whole process, sometimes even talking me off the ledge! I want to do something to show her that we all love her and support her in everything she is going through. Let's all get together and show Macy our support by collecting donations and walking to raise awareness for Arthritis!

There are severeal ways you can help:

JOIN OUR TEAM and you can help by spreading the word to friends, family, co-workers, etc. Then you'll join us on May 19 in Beverly, MA for a 3-mile walk! If you can't make it that day, you can still register and become a "Virtual Walker ". What that means is that you will let people know that you are raising money and awareness for the Arthritis Foundation without being able to participate in the actual Walk.

MAKE A DONATION and you will help raise awareness for the millions of Americans who are living with arthritis, Macy included!

SHARE OUR STORY: When I tell people that Macy has arthritis, most say "I didn't even know kids could get arthritis". The sad reality is that approximately 300,000 kids nationwide (1 out of every 250) have some form of arthritis. As far as I know, there are at least 4 children at the Middle School level with arthritis and many more throughout the town.

I think the most important thing to do is raise awareness so that parents will be able to recognize symptoms sooner than I was able to. We are lucky to live in Boston and be so close to a large group of Pediatric Rheumatologist, but there are many states that have NO Pediatric Rheumatologist. Children can go for years without a diagnosis, which is detrimental to their joint and bone health, not to mention the pain and suffering they go through. By sharing our story and helping to raise funds and awareness, you can help these children. The Arthritis Foundation supports a  Loan Repayment Program  for medical students if they commit to going in to Pediatric Rheumatology. This is a topic worthy of its own blog. I will post more later.  

Thank you so much for taking your time to read Macy's story. I know we are all going through our own daily struggles and there are a lot of people coming at each of us with their hands out for donations. However, if you feel as though this is a worthy cause, please feel free to donate. Even if you aren't able to donate, please share this story and spread the word so that parents, grandparents, aunts, uncles and friends will know that arthritis in kids IS real. If we can help one family get to a diagnosis a little easier, than it is worth sharing!  

Thanks in advance to everyone for all your support!

I want to take a moment and recognize someone in particular who made a special donation. Leanne Willett of Leanne’s Studio of Photography here in Wilmington kindly donated a photo session to Macy so she was able to have a great shot for her site. Thanks Leanne! We always love your work and working with you is always a pleasure!

Links:

Team Macy

Macy Doucette, Youth Ambassador

North Shore Arthritis Walk

Massachusetts Arthritis Foundation

Leanne’s Studio of Photography

Drugs.com