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Hello everyone I have been on this site for a few months now I suffer from spondyloarthritis mainly alkolysing spondylitis and psoriatic arthritis.
I’m speaking to mainly people in Australia but everyone is welcome to join in on this conversation.
I am serverly disabled from my condition and I have currently started to raise funds for myself and I was lucky enough to be donated an electric wheelchair today I am so excited to just be able to go outside.
In doing this fundraising I started thinking about how isolated and depressed I have been and how in Australia awareness of this illness is next to none and the support for it is to be honest is a joke.
I want to start something a new foundation to not just raise funds and support for people like me but to mainly bring people together Because all of us have to turn to an on line support forum because to meet someone else with the same disease near you is so rare and when you just wish you had someone to talk to that understands your pain in can be frustrating.
So my goal is to put a face to all our stories and to make people understand that as my doctor put it
“ it would honestly be easier to treat you if you had cancer”
We have to fight everyday to stay positive to stay independent and to most importantly stay sane!!!
This is my goal this is now what I have chosen to do with my life this disease takes everything from us so now I want to take something from it it’s anonymity!
To all my fellow aussies please feel free to private msg me I would love to hear your stories and any ideas you have on how we can make this possible.
To everyone else I would love to hear your stories to and if we can figure out a way to take this global I’m down for the fight I literally have nothing else to do but work on this and I think it’s time no one ever feels isolated from this disease ever again.
Much love stay fabulous everyone I hope to hear from you soon xx
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