Robe boy explains life with arthritis

Robe school boy Vijay Legoe has explained what it is like living with arthritis as a child.

He captivated the audience at an Arthritis SA parliamentary breakfast in Adelaide when he shared his story.

Politicians from both state and federal governments were among 80 people attending the breakfast at the Stamford Plaza Hotel in Adelaide.

Julie Black CEO of Arthritis SA said: “Vijay stole the show with his honest and accurate reflection on how hard life can be for a child living with arthritis.”

Vijay attends Pembroke Collage as a boarder and staff from the college also attended to hear him talk.

He is the son of Sonia Legoe and her husband, Will Legoe, who own and run Woodsoak Wines.

Vijay’s insightful speech:

Good morning everybody

My name is Vijay Legoe and I live in Robe, South Australia. This morning I am going to be talking about my experience living with juvenile arthritis and how it has changed my life.     

For those of you who don’t know what juvenile arthritis is, or JIA for short, it is an auto immune disorder, which is caused when the body’s immune system, which normally fights off bacteria and viruses, mistakenly attacks its own cells and tissues causing inflammation of the synovium which is tissue that lines the inside of the joints. This inflammation causes heat, redness, swelling and a lot of pain as the body protects itself from attacking itself.

I was diagnosed with Enthesitis related arthritis when I was nine years old, over 5 years ago. The arthritis I experienced was very aggressive, as the onset happened over night. I went to bed feeling fine and woke up with enormous amounts of swelling present across the main joints in the lower part of my body. My ankles were the size of golf balls and my knees were the size of tennis balls. I couldn’t walk at all as my feet were so sore and swollen and I had a high fever which did not subside for a couple of weeks. I remember how much pain I felt and it is hard to describe. I went to hospital for tests and observation where I remained for two weeks; this was really worrying for our whole family. Once I was diagnosed, I was given some exercises and very slowly began to walk again without a wheel chair or crutches but my movement was still restricted and I was still in a lot of pain and very stiff. A year later, new onset of arthritis started attacking my hips and lower parts of my spine.  I have some bone erosion in the base of my spine and now experience constant pain throughout this area.

This was obviously an extremely upsetting time for my parents as they had to look after me, work and take care of my younger brother and sister. I missed a lot of school when I was first diagnosed and was prescribed some very potent medication to be able to walk again unaided.  I also missed playing sports and being active with my friends, as I have always loved participating in team sports.  I am now able to play sports to the extent of others but I really do suffer at night with soreness.  I have been a regular customer of the physiotherapist, chiropractor and our local swimming pool.  As we live in the country, we do not have regular access to some facilities so often have to travel.  We travel 330km to Adel for specialist appointments too.

The medication I was prescribed was really hard to swallow and this became distressing for both myself & my family as we had to find alternative methods to ingest it.  I currently take methotrexate and piroxicam, however, due to the side effects I experience of dizziness, nausea, mouth sores, vomiting, fatigue, sun sensitivity, low iron levels and high liver enzymes I also now have to take folate tablets and iron tablets.

Last October, I was invited to travel to Western Australia to participate in a week long juvenile arthritis camp with 80 other children between 7 and 17 years old, there was one other from Adelaide. I thought the camp was a fantastic experience as I was able to participate in a range of team building activities that catered for everybody’s different abilities.  I particularly loved the canoeing and mountain bike riding.  The camp really gave me the opportunity to bond with other kids with arthritis and experience how others also feel.  It was very helpful to share ideas about pain management, medication, exercise routines and general feelings with others that relate.  As I live in a small country town where no one understands my arthritis, this was really important to open up and share our stories.  I truly believe this camp was an experience that all kids with arthritis should have access to and hopefully more government funding can be directed towards this sort of activity.

Thank you very much for listening