THE BLOG

Falling on Deaf Ears

19/12/2013 11:08 | Updated 17 February 2014

I'm not sure how I've kept running at such a pace, being an advocate for both Gaucher disease and Parkinson's and it's hardly surprising my batteries are on an all time low. I am driven with unstoppable passion and commitment, offering support to others in similar circumstances and trying to create greater awareness. I've made some wonderful friends who are fellow sufferers and understand my plight only too well. However trying to reach and educate the general public about Parkinson's, is not easy when so many other debilitating diseases equally deserve further exposure, but I can only tackle and campaign successfully regarding issues I know and experience personally. I fully realise my words may sometimes fall upon deaf ears, and I don't expect to reach everyone, however I won't let this discourage me, I shall battle on.

If you look at a project or campaign with a defeatist attitude, feel it's too large to tackle, and don't believe it's possible to succeed, then most definitely you won't triumph, and nothing but failure will await you. Even if you've never heard of Gaucher disease, are not interested, don't know anyone with it and are unlikely to ever meet a sufferer; it doesn't matter. Whether it's Gaucher or another disease, there are certain fundamental elements that apply to all. No matter what the situation, let me tell you how never giving up when the going gets tough, with great determination and drive, great things can be accomplished.

Twenty four years ago, the first ever revolutionary medication became available for Gaucher patients. Despite the new Enzyme Replacement Therapy being approved by the FDA, many governments around the world refused at the time, to include the latest and ONLY life saving drug available to Gaucher patients in their Ministry of Health list of medications. Gaucher patients suddenly found themselves in an absurd and frustrating situation. Waiting years for a medication, finally one was invented, answering our prayers, bringing us hope, only to find due to budgetary costs, (as Gaucher disease is rare the i.v medicine fell under 'The Orphan Drug Act of 1983' in the USA) many of the small number of patients requiring treatment were barred from receiving the only drug on the market.

Think for one moment if a cure for cancer was suddenly invented but prohibited from being made available to all Cancer patients due to budgetary reasons. Understandably there would be a worldwide uproar. No one would sit quietly and take a back seat, willing to lose their loved ones, when a medication dangled tantalising within their grasp yet unavailable. What would you do? Would you walk away? Would you sit back and do nothing? I somehow doubt that!

When I undertake something, I do it with 100% dedication and put all my heart and soul into whatever the project or task is at hand. So it has been with my campaign; I don't do things by halves! My health is not good and it's growing increasingly difficult to type. My body is weary from constantly battling two diseases, and I believe fervently in campaigning for as long as I am able. Some may say that "obstinate" is my middle name!

To know Gaucher patients finally had a medicine, but were unable to receive it was almost beyond our comprehension, but we didn't give up; far from it. We launched a strategic battle and had to fight tooth and nail, launching a powerful campaign we attacked from all fronts. A brave and courageous lady established The Gaucher Association and my husband and I, along with several other patients were the founding members creating the first committee. Our aim was to educate and bring awareness to The Government, Ministry of Health, hospitals, doctors and nurses and the general public. Through hard work and long hours, we infiltrated the media, newspapers, television, radio and spoke to individuals with influence. From small beginnings and a lot of hard graft, today Gaucher patients who require treatment receive it, and far more hospitals, and medical staff have heard about Gaucher disease. If a small group of people with a rare disease managed to achieve so much, just think what millions of Parkinson's patients could accomplish.

Has Michael J. Fox given up the fight? Not for one moment. He continues to forge forward coming up with new ideas of fundraising for R&D to find a cure, spreading the word to millions around the world. Although I am just one person, and even if my words may on occasion fall upon deaf ears, I refuse to give up. One small voice alone can make a difference, but in great numbers we have strength, and united we can be victorious.

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