An inspiring juvenile arthritis journey

 

Chris Ka Long Au shares his arthritis story with us…

“Up until I was about 14 years old, I believed I was invincible. On top of my studies at Baulkham Hills High School, I was heavily involved in sports, music, Duke of Edinburgh, laser tag, and other fun activities.

Chris working with the Maestro John Perry of the US in 2013

I remember the first time I felt joint pain, it was about 3 months after my parents had bought me a beautiful grand piano. I had done very well in competitions the year before and my parents deemed my achievements and efforts serious enough to invest in a better instrument for me (see Chris performing below). When I first started to feel pain in my shoulder, neck, and fingers, I thought that perhaps I did not stretch before playing basketball. Or that I did not warm up appropriately.

It wasn’t until I started seeing  some swelling in my joints, constantly waking up with a very stiff neck, and my wrists were at a point I couldn’t even pick myself up from the ground, that a chiropractor suggested I take a blood test. The inflammatory markers were not good, and after taking some steroids, bouncing around some rheumatologists, and doing more tests, that we finally settled upon the waiting room of the kindly Dr. Jeffrey Chaitow. We got started on taking Enbrel Etanercept immediately, and I’ve
been taking it since.

Chris’s GAP year performing in Germany

Fortunately, I’ve been able to go from taking it once a week, and gradually increasing it to 10 days, 14 days, and now every 20 days. Before big performance days or during some flare-ups, I used to take some anti-inflammatory medication as well, but I’ve been able to go without for some time.

Nowadays, I work out about 3 times a week, I do yoga in the mornings, I’m able to practice daily, and I can even perform regularly. Living a healthy, happy, and fulfilling lifestyle has been a big contributing factor to my joint health. My mum wisely told me when I was first diagnosed that this was a sign for me to revise how I was living my life. And to this day, I take any flare-ups or pain as a sign to mindfully engage with how I’m feeling – am I stressed? Am I working too hard? Do I need more sleep? Is it time for my injections? Or have I been too sedentary? Am I not eating enough?

Chris’s first year studying in Toronto

I believe all of these are contributing factors not only to a healthy lifestyle but also to being able to live with Rheumatoid Arthritis. It is not always easy. There has been lessons and performances I’ve had to cancel because of intense joint pain and stiffness. The day after I take injections, I feel lethargic and heavy. Sometimes, the inflammation of joints along with outside stresses affect me psychologically; I feel weak and burdened. Regardless, I have been blessed and fortunate to have mostly amazing days.

Sincerely, I hope my journey and life with JRA is able to inspire other children and give them hope. It’s within our own imperfections and in spite of the crutches we must live with, that we can still live each day with a sense of meaning, hope, and purpose.”

With his condition now in remission, Chris is able to perform, study the piano, and pursue his dream of being a concertising pianist, educator, and advocate of the arts.

Fundraising Concert for Arthritis NSW

During his time in Sydney, he would like to share his music with you via charity concerts. See Chris in action below!

The next concert is on:

When: 6 March, 2pm – 4pm
Where: St Andrews Uniting Church,  South Turramurra
Tickets: Via Donation of an amount of your choosing on the link below, proceeds to Arthritis NSW. (2 tickets remaining – more concerts to come!)

Learn more & book here

Can’t make it to the concert? You can still donate to Arthritis NSW here.