Shortly after his 13th birthday, Emerson started experiencing a lot of pain and stiffness in his hands, knees and wrists. After a few months of doctors appointments and a lot of questions, he was diagnosed with Enthesitis-Related Arthritis, a type of arthritis that involves swelling and inflammation of the connective tissue that attaches to the bone.

Emerson will never forget how he felt in that doctors appointment less than a year ago. He shares tips that have helped him along the way with his new diagnosis, and how he stays active with ERA

My name is Emerson, and I’m from Calgary, Alberta.  Shortly after I turned 13, I started to experience a lot of pain and stiffness in my hands, wrists, and knees. After a few months of investigations, I was diagnosed with Enthesitis-Related Arthritis (ERA).

I will never forget how I felt at that appointment; while my doctor did a great job of communicating this, I remember walking away feeling confused and overwhelmed.  At first, I didn’t understand what was going on, but over time, I started to learn and absorb more after each appointment.

As I understand it, ERA is one type of arthritis; it involves the swelling or inflammation of the connective tissue where the tendons or ligaments attach to the bone.  Basically, my immune system is confused and attacks the cells and tissues in my body’s connective tissues.

It has almost been a year since my diagnosis, and sometimes I find it a little overwhelming to manage all of the medical appointments I now have.  Before all of this happened, I just saw my regular family doctor, and I never really had any health challenges.  Now, I regularly see a pediatrician, a rheumatologist, and do routine blood work and eye exams to make sure everything is ok.  We are still figuring out what medications do and don’t work for me, but I can say that I already feel a lot better than I did six months ago.

There are a few practical things that have helped me along the way with my new diagnosis:

·         Taking my medications and sticking to the plan.

·         Getting enough sleep and resting when I feel I need to.

·         If something hurts, stop!

·         Keeping a journal to write down any observations or questions I have for my doctor.

I think the biggest things I’ve realized is the importance of not pushing myself too hard, but also, to not let ERA take over my life. I have found two activities I enjoy that work for my body and joints.  I’m on a Marksmanship team, which is still hard on some of my joints, but I find it is a great sport for me, and I can still participate in the practices and competitions.  I’ve also adapted by transiting to an electric, pedal-assist bike so that I can even get a good workout, but it’s not hard on my joints. These are helping me to adapt to life with ERA, and still do things I enjoy.

Thank you to Emerson for sharing his story and inspiring us! Your story is unique, inspiring and powerful. Want to share your story? Please contact Kelly at Kelly@cassieandfriends.ca

At Cassie + Friends, we know that sometimes the very best advice on how to support your child is the insight and experience that comes from sharing with others. If you or your child is feeling isolated or overwhelmed – or you’d just like to meet other kids and families living with JIA or any rheumatic disease – please email info@cassieandfriends.ca. You can also sign up here to be notified when our new online support network is up-and-running (expected late-Spring 2020).