Kira

Fundraising to screw my head on. #EhlersDanlos #POTS #CCI #Chiari #Syringomyelia #OTC #MCAS

[Kira @kirafae]

#Kirstinscause
Extreme medical debt from multiple rare conditions #chiari #cci #eds #otc #syringomyelia #iih

•Website: https://t.co/QaqmCDUJ69

•GoFundMe: https://t.co/YAb6B2JpZn

•PayPal: https://t.co/cvoeFm6Csr

Thanks for helping and sharing my cause!

[Kira @kirafae]

@newscomauHQ Knowing both grandparents on one side got in means likely that parent will have it. Don’t have enough knowledge of the other side they died early..it’s a sad disorder and would be hard hearing the risk.

[Kira @kirafae]

@jen165 @murasaki_meezer @andrewg76159902 @newscomauHQ Tried that - having a small social network due to chronic illness doesn’t help. I’m still trying to recover from the debt of private interstate surgeries. My states doctors tell me to move/see the other state doctors and they tell me to seek international specialists.

[Kira @kirafae]

@SydneyLWatson Except those who got it before the vaccines came out…can’t be injured by something they didn’t have. They did have covid and virus causing longterm issues is not a new area.

[Kira @kirafae]

@murasaki_meezer @andrewg76159902 @jen165 @newscomauHQ I’m lucky as well as it has helped with the costs to some degree. It’s still expensive being sick/disabled for some. My treatment was interstate now have to look internationally. How do you afford that on the pension? Do you just stay sick cause you can’t afford to get better?

[Kira @kirafae]

@catedempsey It’s very unusual the neurological issues usually cluster with other disorders when you have EDS and so rarely in isolation like they normally do. People tend to have most of the neurological manifestations or none. Something is setting off a chain reaction .

[Kira @kirafae]

@catedempsey I’m guessing within that there will be a neurological type. That group within the “hEDS” group who seem to get all the same neurological problems. Little bit too suspicious to be chance.

[Kira @kirafae]

@ludawinthesky I am determined never to call myself anything other that what I am. Disabled isn’t a bad word! It’s just a statement of fact.

[Kira @kirafae]

@catedempsey Yes as soon as you touch actual EDS people you can feel the hypermobility vs flexibility easily. I’m glad I went to a genetics department for my clinical dx. Having that on paper shuts people up quickly about the veracity of my dx.

[Kira @kirafae]

Look into international doctors - when you run out of options in your country as a pensioner….gets impossibly expensive quickly.

[Kira @kirafae]

@JoshCrip Yes and that’s one of my things driving me towards and ADHD diagnosis.

[Kira @kirafae]

@SuburbanKL @newscomauHQ I’ve just been told by my specialist I need to start contacting international doctors for help. How do you do that on the pension. I’ve done the little work I can manage from my hospital bed so I can afford the surgery I just had. I’m also luckier than most. Which makes it sadder

[Kira @kirafae]

@andrewg76159902 @jen165 @newscomauHQ Yes and that’s your situation. Everyone else’s is different. You might not have hundreds of dollars in medications and a dozen specialists. You might have family support and she doesn’t. Everyone is different and some don’t get NDIS and other support to help bring down costs etc

[Kira @kirafae]

@AdamTSage @newscomauHQ To get on the disability pension you have to prove you are medically unable to work any decent amount.

[Kira @kirafae]

@ShaneHumphries9 @newscomauHQ What about the people who were too sick/disabled to have ever held down a job? Is it their fault they were born with genetic defects?

[Kira @kirafae]

@ChrisPGATsucks @newscomauHQ Doctors, supplements, medication, allied health, assistive devices + cost of living. Don’t lump the majority in the with minority exploiting the system. You could get sick/hurt tomorrow and be in the exact same spot balancing cost of chronic health and living with minimal money.

[Kira @kirafae]

@jen165 @newscomauHQ Disability and illness doesn’t care about your age. People can be born disabled and go straight into disability pension as soon as they reach 18. Yet are expected to pay for all the normal costs + the exceptional expenses that come with chronic illness/disability.

[Kira @kirafae]

@SuburbanKL @newscomauHQ If you are sick enough to be on the disability pension the medical costs frequently surpass what you get. Yes some people just suck with money. The majority are being put into a position they had zero choice in.

[Kira @kirafae]

@newscomauHQ I have a feeling he probably doesn’t have great idea what it’s like picking which essential to get. Especially when you are in this position through no fault or choice of your own. Illness and disability doesn’t discriminate and could occur to anyone suddenly.

[news.com.au @newscomauHQ]

A pensioner with $20 to her name has asked the Treasurer whether she should go without food or medicine.

https://t.co/qkMQuGpCCM