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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.
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.
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.
I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs.
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.
I read somewhere that hope is a passion for what is possible and truly I live by it.
Having some way to record diagnosed cases would give solid data around how many New Zealanders are dealing with this terrible disorder.
Being different isn’t a bad thing - heck, maybe it’s my superpower!
I have MSA-C, a rare neurological condition that came on in my early 60s, primarily caused by the shrinking of my cerebellum.
My family and friends all signed the petition to make our healthcare system Fair for Rare. I think I got about 60-80 signatures, Mum was proud.
My mother and I both have rare diseases and have vastly different experiences in dealing with the health system.