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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.
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.
I went home and researched and came upon the Tatton Brown Rahman Syndrome group on Facebook - I knew instantly this is what Flynn has.
If there had been a framework for his rare condition, the experience would have been very different.
I want to raise awareness in New Zealand as not many specialists have even heard of it.