Stories project
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.
Frank's story
I was diagnosed with Waldenstroms Macroglobulinemia in December 2012. A blood test showed up some issues and more comprehensive tests led to the diagnosis.
Tamara's story
I'm one of approx 1:3,000 worldwide people including New Zealanders with this disease, HHT, that has no cure. A lot of sufferers are misdiagnosed and/or don't know they have it, due to symptoms varying and being complex in nature.
Nathan's story
Nathan has Autism and has a rare chromosome deletion. There are less than 20 people in the world known to have this condition.
Kayla's story
Stills is rare – and like many rare diseases, it is poorly understood within the medical community and good information is hard to come by.
Courtney's story
If you sat with me, you wouldn’t know I have CRPS because I look completely healthy. If I’m having a flare, no one will notice unless they understand CRPS.
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.
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.
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.
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.
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.