This letter was written by Taylor Duffy, a teen with systemic juvenile idiopathic arthritis (SJIA), to Arthritis Research Canada. It is written in her own words because we feel it conveys the emotion and raw experience of being diagnosed with arthritis at a young age. It is a story everyone should read during Arthritis Awareness Month because it helps to dispel some of the misconceptions people have about the different forms of this disease and the people who have them.
Hi there! My name is Taylor Duffy. I am from Toronto, Ontario, but I currently live in Newfoundland. Here’s the story of how I dealt with a systemic juvenile idiopathic arthritis diagnosis at twelve years old.
There were no warning signs to me being sick. I obviously had never dealt with it, so I may have been feeling not like myself before the first ordeal, but considering it was six years ago (this September) that it all started, I can’t really remember.
The first thing I noticed was the rash. It was my very first day of the seventh grade, and I noticed a light pink/salmon colored rash that started on my forearms. It was like splotches, but also the occasional streak here and there. I ignored it, and told my mom about it when I went home that night.
For the next few days, I started to feel worse and worse. The rash had spread to my entire body, and it was extremely itchy. I had pain so bad in my throat that I couldn’t bear to swallow my own saliva, and had to spit into a cup until my body forced itself to (gross, I know). I eventually went to our family doctor who misdiagnosed me with scarlet fever, and I was put onto some sort of liquid medicine that tasted like chalk.
I didn’t feel any better. My mom was trying to get me to go to school, and I was made to speak to my guidance counselor because she thought I was just depressed, but I knew something was up with my body. I was stiff all the time in my knees and hips, but I didn’t tell anyone because I thought it may have been the way I slept or the gym classes I was taking.
After a while of failing and succeeding to get me to go to school, my mom took me to the hospital and I had blood tests done, where they found something off in my blood cells. So, I was then taken to a hospital in Oakville, and then to Sick Kids where I spent six days.
I was woken up at four o’clock in the morning every day for blood work, as well as many other times during the day. In the early stage of my stay, I had a spinal tap to rule out meningitis. Doctors came in my room every morning to stretch my feet and feel my joints in my toes and hands, hips, etc., but I didn’t know why.
At the end of my stay, I was given the diagnoses: SJIA or systemic juvenile idiopathic arthritis. I was told it was basically my immune system attacking my joints, for no known reason. I was confused and upset, but I didn’t really think it was anything serious. I thought it was weird, having arthritis at the age of 12 (almost 13) because I had the idea it was an old person thing.
So, I went on many types of medications that would work for a little bit and then stop. I was on steroids which made my hair fall out and caused massive weight gain, and then I was on what’s called Anakinra, which is a daily injection that I administered to myself, at 13 years old.
In April of 2013, about six months after my diagnosis, I had my first real “surgery” you could call it. I had steroids injected into my shoulders, hips, elbows, knees and ankles. I couldn’t move for two days, but I at least didn’t have to go to school.
It was about November of 2013 when I learned that I was in remission. Only a year isn’t bad, but when I think of all the suffering I had to go through in a short period of time, a year felt like five. I had doctor appointments every couple of weeks where I would get blood done and have my joints tested. I would tell the doctors what hurt, and they would change up the dosage of meds, or suggest a different type.
I was in remission from the end of 2013, until the end of October 2017. About five years after my first diagnosis. For a week, my right knee was swollen and stiff, and I knew right away what it was. I got blood drawn, and I sure enough had relapsed, but thankfully only into my right knee. I got put onto Naproxen, and I had another steroid injection in my knee on March 22nd of this year, while awake (Ouch!). It has been five months since that injection, and I feel fantastic. I have no pain.
The one thing I always tell people is that even though I am in remission, I am not like how I used to be. Now 18, I have problems with my hips, my joints in my left hand sometimes lock, my knees sometimes give out on me and they’re always in pain, and I can always feel those things. Doesn’t stop me from wearing heels though!
The one thing I learned and continue to learn from the experience is that life is what you make it. I didn’t let the arthritis tear me down or change who I am. I am a graduate of high school. I have my first official long-term job. And I am going to university to become a rheumatologist for children. Seeing what I went though, I think there is no better career for me. I know the struggle and the guilt the parents went through because I saw it in my own. I know the pain the children go through because I dealt with it myself.
I want to be able to help others by using my own experience for good. I don’t hate what happened to me. I think what happens to you is meant to happen. It’s made me a better person (not physically, but my creaking joints are a real party trick). I hope one day I can make a difference in the lives of children who are going through the same thing I went through at such a young age, so I can remind them how important it is to stay strong. I have to, knowing it’s only a matter of time before I relapse again, or I may be in a wheelchair at a young age. It’s not in my control, and I’m okay with that. I’m taking it one day at a time.
We would like to thank Taylor for allowing us to share her story during Arthritis Awareness Month. Arthritis impacts 5.6 million Canadians of all ages. But through research, Arthritis Research Canada is able to give people with arthritis better, more timely and cost-effective solutions for living with their disease. Our research is aimed at arthritis prevention, early diagnosis and treatment and quality of life issues. For more information about what we do, please click here.