Rare disease will not slow this girl down

Matamata Chronicle - - News - By NI­COLA STE­WART ni­cola.ste­wart@wrcn.co.nz

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.

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