Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.

Jun 4, 2023, 6:21 PM
Debbie's story

I have had CRPS for almost 10 years now. C.R.P.S or CRPS is a neurological chronic pain condition. Our injuries heal, but our brain keeps sending out constant pain signals, our central nervous system malfunctions and even our autonomic system begins to misfire.

Apr 5, 2023, 10:49 PM
Jamie's story

Although pheochromocytoma is rare, it is a condition that more and more people are turning up with. It would be great if more people could have it diagnosed so that it isn't diagnosed post-mortem.

Feb 28, 2023, 1:57 PM
Ele's story

While the thought of having a rare disease was daunting to say the least, I was relieved to finally have a reason for my being the way I was and feeling the way I felt.

Feb 12, 2023, 3:24 PM
Rachael's story

The doctors would start to think it was in my head as these symptoms were so "random" and that I had hypochondriac tendencies.

Jan 10, 2023, 10:44 PM
Jayne's story

It was a relief to be told I had something, as over the years there have been a variety of medical investigations; GP, psychological, gynaecological, physiotherapy, orthopaedic to mention a few.

Sep 12, 2022, 9:54 PM
Zoey's story

As a parent, it is just excruciating watching your child struggle and knowing there is an alternative out there but its not accessible and there's nothing you can do about it.

Aug 6, 2022, 10:46 PM
Danielle's story

Every time a check-up comes around, I feel that 'scanxiety'. I don't know what the future holds for me, but I have learned to take each day as it comes.

Jul 20, 2022, 12:07 AM
Ellie's story

I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs.

Apr 4, 2022, 11:04 PM
Ava's story

Deep down I always knew she was a little different, she didn’t make a sound when she was born and she cried for the first time at 3 months old.

Jun 29, 2021, 9:13 AM
Prerna's story

I read somewhere that hope is a passion for what is possible and truly I live by it.