With more than 400,000 New Zealanders living with kidney disease, Harri Jordan meets a local support group helping Nelsonians feel like they are part of a community.
When Roelof de Haan first learned his daughter was diagnosed with a rare kidney disease he knew what he had to do.
Initially, they thought that the 14-year-old just had some stomach problems, but then a friend told them to get her blood tested.
It was then that they realised that she had nephronophthisis – a genetic disorder of the kidneys which is inherited by the recessive genes from both parents.
It was 2008 and, while she was able to go onto dialysis for a time, it was clear that she needed a transplant. That’s when Roelof stepped in.
“There are long-term risks to donating a kidney, but you give somebody the gift of life to someone struggling to just get by,” he says.
“They don’t tend to last forever but it’s the closest thing to a cure.”
But then, after seven good years, his daughter suffered renal failure of the donated kidney while she was at university in Wellington and had to drop out.
For the past four years, she has been on dialysis three times a week, which filters and purifies her blood.
It helps keep fluids and electrolytes in balance when the kidneys can’t do their job.
She is only 26-years-old however, her story is not unique.
There are more than 400,000 New Zealanders who suffer from kidney disease.
The saga of the de Haan family’s struggles with kidney failure came to light on Sunday as part of a barbecue hosted by the Nelson Kidney Support group.
Roelof and members of Nelson Kidney Support want to raise awareness about organ donation to those who don’t understand it.
The event brought together about 15 people with tales to tell of their struggles with kidney disease and the way it has changed their lives.
Founder of the group, Linda Putter, wants the public to know there is support out there.
“When I first came here there was no kidney support,” she says.
The group are positive, optimistic and have a good laugh together, despite the difficulties that many of them endure daily.
Marie Gill has been on the waiting list for a kidney for ten years.
“People aren’t aware,” she says. “For someone to donate organs you have to be in ICU on life support and declared brain dead and your family have to agree to contribute your organs.”
This is true even if your driver’s licence is marked ‘donor’.
“That’s why it’s really important for people to have these conversations to say ‘I would like to donate these organs’. Before it’s too late,” says Marie.
To speak to Linda please e-mail: firstname.lastname@example.org.
Anyone interested in reading more about the subject of kidney donation can do so here.