Stories

Patients with lived experience of rare share their stories.

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Lizzie's story

22 Mar 2020

My daughter Lizzie was born in 2003 in Rotorua. She was a full-term baby deliv…

Susan's story

18 Mar 2020

Many people may have this condition undiagnosed and may have diminished quality of life, or pass prematurely due to lack of knowledge. No celebrity has come forward with HHT, maybe if someone did it would gain more attention and support, which is sad really, as everyone’s life is valuable.

James' story

1 Feb 2020

James was a delightful Wellington toddler when his family were told that he had a rare disorder. In fact, so rare that there was no formal diagnosis.

Shirley's story

5 Jan 2020

I am 78 years old and have suffered from Primary Lymphoedema most of my life w…

Roger's story

5 Jan 2020

I have a rare disorder called Radioulna Synostosis. None of my family have thi…

Carol-Anne's story

9 Oct 2019

In some ways I'm lucky, I'm not alone in my family with Fabry Disease, being X chromosome linked and inherited it affects four generations and half of my extended family. I share medications and symptoms with others.

Malany's story

19 Aug 2019

Phenylketonuria (PKU) is a rare metabolic disease that is picked up at birth. If you have a child and can remember the heel prick test that is completed within a few days of giving birth - one of the things the test checks for is what I have!

Natalie's story

18 Jul 2019

Natalie is my first much adored grandchild. I visited New Zealand from England…

Kim's story

4 Apr 2019

It all started a few years ago after intensive physio for breaking my leg. The…

Jarod's story

1 Apr 2019

Jarod was born on the 4th of July 2008. He was a healthy weight of 9 pounds 14…

Denise's story

1 Apr 2019

I was originally diagnosed with LGMD (limb girdle muscular dystrophy) around t…

Sarah's story

28 Feb 2019

My life changed forever when I was 15 years old and developed a rare neurological disorder called idiopathic intracranial hypertension (IIH).
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Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

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