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.

Jan 5, 2020, 4:13 PM
Shirley's story

His parting words to me were that I "would be in a wheelchair within five years so get used to the idea.”

Jan 5, 2020, 12:29 PM
Roger's story

When I was growing up, I didn’t think of myself as being any different to other children.

Oct 9, 2019, 9:45 AM
Carol-Anne's story

I believe we deserve the same respect as anyone else - we shouldn't have to fight to get available treatments funded.

Aug 19, 2019, 10:20 AM
Malany's story

I only wish that the quality of mine and other’s lives could be improved with a bit more care and funding.

Jul 18, 2019, 10:57 AM
Natalie's story

We all just assumed that NZ would follow suit and were devastated when PHARMAC decided to defer their decision.

Apr 4, 2019, 3:49 PM
Kim's story

DNA testing can’t match my strain and testing isn’t advanced enough for that to be a possibility in my lifetime.

Apr 1, 2019, 4:12 PM
Jarod's story

What would be great is if doctors had more understanding towards parents.

Apr 1, 2019, 4:08 PM
Denise's story

I would love to see this inequality changed as it seems to me that it should be based on need rather than cause.

Feb 28, 2019, 2:38 PM
Sarah's story

I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.

Feb 28, 2019, 9:36 AM
Evie's story

We like to focus on what Evie can do, rather than what she can't.