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.
Travelling this journey of rare disorders is isolating, exhausting, frustrating and it feels like there is no equality.
His parting words to me were that I "would be in a wheelchair within five years so get used to the idea.”
When I was growing up, I didn’t think of myself as being any different to other children.
I believe we deserve the same respect as anyone else - we shouldn't have to fight to get available treatments funded.
I only wish that the quality of mine and other’s lives could be improved with a bit more care and funding.
We all just assumed that NZ would follow suit and were devastated when PHARMAC decided to defer their decision.
DNA testing can’t match my strain and testing isn’t advanced enough for that to be a possibility in my lifetime.
What would be great is if doctors had more understanding towards parents.
I would love to see this inequality changed as it seems to me that it should be based on need rather than cause.
I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.