Rheumatoid Arthritis

 

"For the most part, I live my life positively and healthily - but I have a disease that affects hundreds of thousands of Australians – three out of four of whom are women.

It's an incurable disease that sadly carries a stigma.

It's a disease where sufferers feel isolated and don't believe they can ever get better - but it's not depression.

Women put off pregnancy, can't nurse their babies and take care of their families - but it's not breast cancer.

Quite simply it is arthritis - more specifically, Rheumatoid Arthritis (RA). The PA Research Foundation is trying to forever change the face of this debilitating disease and like the cervical cancer vaccine – bring the world a cure.

Never before have researchers been closer to providing a solution to a disease affecting the quality of lives of hundreds of thousands of Australians.

Researchers have discovered a mechanism enabling them to reset the immune system in RA – they have a preventative in their sights.

This mechanism re-educates the immune system and this discovery has led to the development of a rheumatoid arthritis vaccine known as Rheumavax – now in Phase I of clinical trials.

I am one of the many people on the trial who all share the same dream.

My son Jack, is only eight years old but already knows more about RA than the average Australian.

As much as I don't want this disease to define me – Jack understands its limitations. He accepts that my wrist is damaged beyond repair so that playing a game of tennis or ten pin bowling with him are my Everest's.

I was only 28 when I suffered a bout of food poisoning that triggered the disease, resulting in swollen toes and problems walking which ultimately led to a diagnosis that forever changed my life. I've had two arthroscopies on my left elbow and hand, a collapsed wrist and major joint degeneration in both feet that now requires surgery – but I can't afford to be off my feet, away from home and work for three to four months at a time.

Yet like all Everest climbers – I have my Sherpa – my guide on this indomitable challenge is Professor Ranjeny Thomas and through funding by the PA Research Foundation, I can truly say my pain is now constrained and managed.

That is the very reason I am part of this trial. I'd like to highlight that RA does not only affect the elderly, but people of all ages including young children. My pain is real and creates obstacles that don't allow me to give what I would like to those that I love, or to be the mother, daughter, sister, friend and partner that I'd hoped to be.

Please don't let my son remember me saying, "Sorry buddy, I can't do that because of my wrists" or have him grow up so fast he feels responsible to help me do simple tasks that I find difficult or painful.

There is nothing glamorous about RA – it is painful, disfiguring, debilitating and ruining the lives of millions of Australians. But we can do something about it."

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