Coping with killer cough routine for twins

Renee and Natalie Smith were always sick kids.

They were continuously coughing, couldn't stand the sight or smell of food and complained of sore legs.

But the twins, now 22, didn't know anything was wrong until they were diagnosed with cystic fibrosis about six or seven years ago.

Since their diagnosis they've had to take about 30 pills a day to help keep them well.

Doctors have already told them they weren't expected to live as long as they have.

Many sufferers die in their teens while the average age of mortality is 30.

Since the early 1980s all newborns have been tested for cystic fibrosis through a blood sample taken when the babies are about five days old. It's meant to identify babies with cystic fibrosis but for some reason it didn't pick up Natalie and Renee's condition.

So the pair struggled through their early years with no medication to help their condition.

This week is Cystic Fibrosis Awareness Week.

About half a dozen families in Rotorua have children with cystic fibrosis.

At the moment the pair have their good and bad days - and play a tag team of one being well while the other is sick.

They are still always coughing and get hit by bugs - particularly in the winter.

"I always have a cough and everyone looks at me like I have germs," Renee said.

Winter generally means a hospital stay for one of them too. At the moment Natalie is in Rotorua Hospital because of complications with her cystic fibrosis.

And they're meant to have massages daily to loosen the phlegm.

But the pair admit it doesn't always happen and they've been a bit casual about their illness.

"It's just something we'll end up dying with," Natalie said.

The doctors have told Natalie if she doesn't start to take better care of herself that's something she'll have to face sooner than expected.

That scares Renee, but Natalie isn't so worried. One of the upsides, they say, is they have to eat a lot of fatty foods because they don't absorb fat easily.

Cystic Fibrosis Association of New Zealand chief executive Kate Russell said while the condition was uncommon in Maori it was becoming more common.

About 1 in 25 Caucasians or 1 in 300 of other ethnicities carry the gene and both parents must carry the abnormal gene to have a child with the condition.

Just because both parents carry the gene doesn't necessarily mean they will have a child with it.

Ms Russell said the pair were unfortunate in not getting diagnosed early. Generally speaking, the earlier the condition was caught the better the outcome.

She said the oldest person in New Zealand with it was 54 but Ms Russell said that was a highly unusual case.