Mum with a rare neurological condition needs help to get overseas for urgent medical treatment before it’s too late.
Wellington, Masterton District
Hi, my name is Tash; and I am a 32-year-old mum to 2 young children who lives in New Zealand. I have been livestreaming my journey the last month or so on a gaming platform called Twitch. I’ve had a rare neurological condition called complex regional pain syndrome or CRPS for the last eight years. My CRPS developed after carpal tunnel surgery on both hands over 8 years ago. CRPS is rated the most painful condition on the McGill pain scale, higher than the pain from childbirth or amputation. I would know I’ve had two kids naturally... CRPS is nicknamed the suicide disease: it causes severe nerve pain and there is no standardised treatment in New Zealand. Doctors in here don’t know what to do to with me. CRPS feels like being wrapped in barbed wire, while being set on fire and then electrocuted. It can change as quickly as the lights on traffic lights. One minute you can be smiling dealing with the pain and the next second it’s excruciating, and you’re paralysed. In the last few days, I have lost my ability to walk, and I am now in a wheelchair... I can feel it spreading inside my body now... and I can feel it happening fast. There is no proper treatment in New Zealand for CRPS.. Please help me, I can’t be this pain much longer it’s more than anyone should have to live with. I wouldn’t wish it upon my worst enemy.. I deserve a chance to have some quality of life, to be able to hug and kiss my children again and my kids deserve a mum. This is no life…
Flights to get to America for Tash and Josh and her children, living costs and medical treatment/aftercare. Plans are being formulated fast but right now we are talking to a CRPS specialist in Florida about Ketamine infusions.
NZ Herald news story 28 June 2024
I face some huge fears of mine the other day when I talk to a journalist for the New Zealand Herald. I was actually an old school friend of mine so that made the whole process a little bit easier but is very hard putting out there to the world like that Part of what happened to me. I feel like it was only the top of the iceberg because Siri is such a big one but I feel amazing now for having spread more awareness about this disease. Because it just isn’t given much time because usually people don’t want to hear about it. It’s too hard it’s pain and people don’t understand it . Especially me most people see me and they think that I look fine it can’t be that bad you know that I must be exaggerating. And that’s how the medical system has treated me here for years and it’s traumatised me. I’ve linked the article and all my social media and you can also find it if you just search CPM and google it seems to come up first or jump onto the New Zealand Herald website and this is the title below; Complex Regional Pain Syndrome: Kiwi mum with ‘most painful condition’ seeks life-changing treatment
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