Rare disease will not slow this girl down
Matamata resident Natalie Butcher took part in the Taupo Great Lake Relay on Saturday hoping to raise awareness of her ultra-rare blood disease.
The 32- year- old was diagnosed with paroxysmal nocturnal haemoglobinuria five years ago after suffering years of excruciating abdominal pain.
Speaking to the Chronicle ahead of the 155km relay on Friday, Natalie said she entered as part of a campaign to lobby drug agency Pharmac to fund potentially lifesaving treatment.
A drug named Soliris, reported to cost around $ 500,000 a year, has proven effective against PNH.
‘‘ We are trying to keep up awareness of our campaign but because so few of us have PNH it’s hard to gain momentum,’’ said Natalie.
‘‘We should not be discriminated against because we have an ultrarare disease, as opposed to a more common disease.’’
There are currently only 19 Kiwis with PNH, which develops without warning and can strike at any time.
PNH can trigger a number of con- ditions, including anaemia and fatigue, abdominal pain or stroke.
Some 35 per cent of sufferers die within five years of diagnosis from blood clots or kidney failure.
‘‘If money is the only reason that’s preventing Pharmac from funding this treatment, then I simply don’t understand how they can put a figure on someone’s life,’’ Natalie said.
Seventeen team members joined Natalie in the relay, including her younger sister Katrina.
Natalie has often had to rely on her family for support since her diagnosis, as chronic fatigue impacted every aspect of her life.
‘‘Mum is really the only person who truly understands the exhaustion and excruciating pain that I experience with PNH,’’ she said. ‘‘ There are some nights when I just can’t sleep because I’m in so much pain.’’
The symptoms had worsened in the past 12 months and while she was not at the stage of needing Soliris, she knew others who were.
More than 40 countries subsidise the drug.
‘‘New Zealand should be funding this drug . . . it should be a straight forward decision. I don’t want to be at death’s door before finally accessing this treatment.’’
Check up: Natalie Butcher has to undergo regular blood tests to monitor the ultrarare blood disease she was diagnosed with five years ago.