Finding freedom from arthritis
Our members are the foundation of Arthritis NSW and each has their own story to tell. They differ in age, gender, location and personal history, but they all joined the organisation to gain greater understanding of their condition and how to manage it to improve their lives.
Annika is 11 and lives with her family in Orange. She was diagnosed with juvenile idiopathic arthritis (JIA) at age seven when she experienced strong pain and immobility in her right leg after a soccer game. Annika continues her story.
‘We hadn’t lived in Orange long when my leg started to hurt. We’d moved from Cobar, so we didn’t know many good doctors then. One doctor told me that I had to stay in bed until my leg got better. People with arthritis know that staying in bed is a very bad thing. For me, the pain just got worse until I couldn’t walk at all. Mum and dad were scared because no-one knew what to do. They were told to try different things like chiropractors cracking my joints. That helped a little but now they are scared that they might have made things worse.
‘The doctors took some scans and when they measured me, one leg was a lot shorter than the other. I saw kid doctors and bone doctors, lots of different doctors. Finally, they told mum to take me to a special doctor who was going to be in Orange for just one day and he made time to see me. He was Dr Davinder (Paediatric Rheumatologist Dr Davinder Singh-Grewal). I have known him for years now. He diagnosed me straight away with juvenile arthritis. I also had arthritis in my jaw, which is strange, and later got it in my knees.
‘It had taken a few months to finally find the right doctor. Mum and dad think that if we had still lived in Cobar it would have taken years because it is so hard to see special doctors out there.
‘I have to take a lot of tablets every day and look after myself. At school I get to sit on a cushion in class because my hips get uncomfortable in a hard chair. I had to stop playing soccer for a whole year because I needed to get better and it took a long time. I used to be sporty but now I am not so much. That made me sad and I started to see the counsellor because I was sad all the time. I’m much happier now because Dr Davinder says I’m ok, but I still take lots of tablets.’
Francis is 57 and lives in Putney, Sydney. He was born with spina bifida and wore callipers until he was 11 years old. Following surgery at 12 he was able to walk unaided and played cricket at school. In his early 40s scans revealed he had no more cartilage in his ankles so he started wearing orthopaedic footwear. In 2013 he noticed pain in his left knee which was diagnosed as arthritis. Francis takes up his story.
‘After the arthritis diagnosis, I embarked on an exercise program to strengthen the muscles around the knee. I have a terrific personal trainer and rarely have pain in my knee now. I also learned that weight loss is crucial. The less you weigh, the less pain you have. Since my mid 20s I have weighed between 80kg – 106kg. So now I know the answer is to eat a healthy diet and exercise, and that will mean less pain medication.
‘I joined Arthritis & Osteoporosis NSW just because it seemed like a good idea at the time. I’m glad I did. They give good advice and there are good tools for understanding and dealing with arthritis, courses for example.
I attend the warm water classes at Ryde and they are great. As a disabled person, exercise is difficult, being on my legs is difficult. Also, the social aspect is great. I’ve made friends with the people in my class. We’re meeting this Wednesday for lunch.
‘My parents were refugees from Slovenia who came to Australia after the war, so my heritage is Slovenian with a touch of Russian. I have two brothers and two sisters and nephews and nieces. I worked in the public service for 35 years. I’m a big sports fan and devoted follower of the South Sydney Rabbitohs. My main hobby is music, I make it every day. On the advice of my psychologist I’m also studying Russian, trying to improve my playing skills and knowledge of music theory. These hobbies along with all the medical stuff takes up all my time.’