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love_me_some_reddit t1_iwi84z8 wrote

I have spina bifida. I wish There was more they could do for me at 44. One day this terrible defect will be gone for good! Thank you science!


Sawses t1_iwj1ngz wrote

My childhood best friend has this condition. He wanted to be a marine biologist...but biology and marine biology in particular is not friendly to people with limited mobility. You just can't do most of the things that make you a biologist if you can't use both hands and both legs.

So he ended up working a help desk job and living with his parents. It's a condition that took so much away from him, and I'm so pleased that it looks like we might have a feasible treatment finally.

I've done work in embryology and genetic disorders, and if you'd asked me 10 years ago about spina bifida, I'd never have imagined we'd see something like this in my lifetime.


love_me_some_reddit t1_iwj2tns wrote

I have to live with my parents also. It's also been tough to work with all the surgeries I have to have, and the rules I have to follow to keep Medicaid.


Batman_MD t1_iwjh8qx wrote

I hope we get universal healthcare just so people like you don’t need to follow rules just to be able to get the help you need. I’m sorry we have let you down.


love_me_some_reddit t1_iwjmbjg wrote

I hope so as well. I don't hold out much hope though. The best way I can help right now is to talk to parents of children with spina bifida. Help them prepare for their child getting older and what comes along with it. Man, I wish I could make that a job!

Take me for example. I played basketball with my friends growing up, I walked stairs, and I did most things everyone did. Albeit with a lot of challenges. As I aged my body was taken away from me. I was not prepared for that. So many others will not be as well. They need help understanding the progression. I wish I could reach them all, or get the ones I reach the ability to look beyond 10 years.


Batman_MD t1_iwjpl45 wrote

It sounds like you’re doing a pretty amazing effort to help people that are going to go through what you have. Who says it isn’t a job? Look into SB outreach programs and if there isn’t anything…maybe that’s your calling? Its definitely not easy, but it sounds like you have a passion for it and the drive to do it.


BabaYagaInYoFace t1_iwjlrrl wrote

We didn’t let them down. We pay our taxes in hopes that it goes towards something worth paying towards.

But no it goes towards more yachts for the assholes “running” the show and keeping us poor and paying out the ass for insurance.

Our greedy government let them down.


Batman_MD t1_iwjnzbd wrote

And we haven’t eaten them alive yet, so that’s on us. They’re supposed to represent us, not fuck us. But here we are..


technofuture8 OP t1_iwjcc5k wrote

Yes technology is advancing at an incredible pace these days. I can't imagine what we'll see in the next 50 years.


Ipleadedthefifth t1_iwja7g2 wrote

I was diagnosed with spina bifida as a teenager. It wasn't so severe to be considered a disability. But it has given me back problems for my entire adult life. It has robbed me of many experiences. I was told there was nothing that could be done. I would die a happy man, if on my last day on earth, I learned they found a cure, or a treatment.