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Pompe battler shines for advocacy

Allyson Lock, who has just been recognised for her advocacy work for people with rare diseases, at Wairarapa Hospital getting her myozyme infusion treatment. PHOTO/HAYLEY GASTMEIER

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A Masterton woman with a disease that affects just 10 other Kiwis has been praised for her significant efforts advocating for people suffering from rare diseases in New Zealand.

Allyson Lock has been awarded the Rare Disease Day Patient Advocacy and Support Award, which she will receive from Governor-General Dame Patsy Reddy at a special ceremony at Government House on February 28.

Lock, a mother of three, said the news came as a complete surprise.

“The email came through and I read the subject line and thought ‘I hope a good person wins that’, and I just went back to what I was doing.

“Then I read it . . . I was shocked actually.”

Lock was diagnosed with Pompe disease in July 2010.

Pompe disease is a rare condition without funded treatment in New Zealand.

It is genetic, damaging muscle and nerve cells, and affecting mobility and the respiratory system.

Since being diagnosed, it has been Lock’s goal to get funded treatment for New Zealanders.

She set up the New Zealand Pompe Network eight years ago and continued to advocate for others with the disease while managing her own health, which included years of regularly traveling overseas for treatment.

Lock has been instrumental in getting affected Kiwis on to drug trials, including the International Compassionate Access Programme.

This programme means Lock can now get her Myozyme treatment in Masterton, and three other Kiwis who fit the criteria can get treatment near their homes.

The drug improves quality of life for Pompe sufferers, Lock said.

“I’ll need it every two weeks for the rest of my life, she said speaking from Wairarapa Hospital while getting her fortnightly four-hour infusion last week.

She said she would not feel deserving of the award until Myozyme was funded by Pharmac.

The pharmaceutical giant has started funding the drug in New Zealand for children diagnosed under two.

“But we don’t have any of those,” Lock said.

“This is the drug that nearly 80 countries fund for their people, but not in good old New Zealand.”

Her life’s mission was to “keep harassing” Pharmac to fund the drug here, and to get new born babies screened for the disease.

She said if infants with the condition went undiagnosed, they would likely die before turning one.

It had been the board of New Zealand Pompe Network that nominated Lock, the charity’s president, for the award.

“She is a tireless fighter for the Pompe community and I truly believe she deserves this award for all her years of fighting for us,” the nomination said.

The New Zealand Organisation for Rare Disorders is the host of New Zealand Rare Disease Day.

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