VF in the News

Toni-Jane’s Story

Mother Misses Out On Some Basics

A rare auto-immune disease makes it difficult for a Christchurch mother to pick up and hold her young daughter. Toni-Jane, 32, of Parklands, was diagnosed with a form of vasculitis, known as Takayasu’s arteritis, at the age of 25. It took a whole year for tests and misdiagnosis for Toni-Jane to find out what was wrong with her. The disease affects the main blood vessel that leaves the heart, causing arteries to inflame, which restricts blood flow.

“I knew something was wrong,” Toni-Jane said. “I was so tired all the time and I would get really bad dizzy spells, and I had pain my arms too.” Toni-Jane suffered a stroked because of the narrowing of an artery that carries blood to the brain.

She recovered well and doctors prescribed her with prednisone, a steroid that “has some pretty nasty side-effects.” “I have gained 36 kilograms since I started prednisone,” Toni-Jane said.

“It also causes male features, so my voice is deeper than it used to be. I’ve got hair on my face, my face looks really bloated and people would think I have eaten too many burgers.”

Two years ago Toni-Jane gave birth to daughter Olivia despite some doctors telling “it wouldn’t be wise to have a baby. I was considered a high risk pregnancy because the effect of my condition is that you can’t get a blood-pressure reading and I can’t have anesthetic of any form, so it was a very natural birth,” she said.

Toni-Jane said the “very worst thing about the disease” was not being able to pick up her daughter or play with her for long periods.

“My arms are the worst affected parts of my body. ..so I can’t bend down and pick her up, which is really hard sometimes because she doesn’t understand and she looks up at me and says, ‘Mummy, cuddle,’ but I can’t.”

“Every day I have to make silly decisions like, “Do I make my bed or do I brush my hair? That can be frustrating,” she said.

Toni-Jane has set up a group called Vasculitis Support New Zealand and “hopes to connect with other sufferers”.

Clincal immunologist John O’Donnell said there was no known cause of Takayasu’s arteritis.

Reprinted with permission from The Press.co.nz
Georgina Stylianou
Photo credit: Stacy Squires

Toni-Jane , a Takayasu’s arteritis patient living in New Zealand, celebrated Vasculitis Awareness Month by being sharing her story in her local newspaper and starting a Facebook group to connect patients with each other.  

Published: September 2012

To read more stories, please visit the Vasculitis Stories landing page.