Living with Spina Bifida; an invisible disorder

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[corinnehawkins]

I have spinabifida myself and it's not invisible it's there it's noticeable I have a severe case of spinabifida but even though I have a severe case of spinabifida I'm still sitting here alive and strong

[ashleycole]

I also have spina bifida I am the first corrective surgery patient in the USA. I am 60 and happy to have made ot this far. You are correct it is an invisible disability. Stay strong

[akshaytanksale]

I am 36 years old male from India. Being born in the year 1988, I got surgically operated for mylomeningocele. Until I reached 21 life was absolutely normal as I could walk, run and do all the things the normal kids would do. But suddenly this got changed and one day I got a swelling around the operated region and I lost the control on my bladder and bowels. So since 15 years I have been using intermittent catheterization 4 times a day to vacate my bladder also taking 3 table spoons of castor oil every night to somehow vacate the bowel. This has resulted in having urinary tract infections, pooping inside the pants during nights unknowingly and many other difficulties. Life is strange full of anxiety and insecurity. But I always try to keep it up by thinking that atleast I am able to walk on my legs. All this I stated because if someone reading this message has gone through the surgery during birth should be aware about the consequences which might occur not to scare them but just prepare mentally and physically and emotionally.

[joellebaker]

I was born with hydrocephalus and spina bifida and was paralyzed from the waist down, by age 2 yrs old I started to walk, but by the time I was 16 yrs old my legs were shutting down, I now am 54 yrs old and I waddle, I was told that my spine is deteriorating and I will be in a wheelchair eventually, I also have degenerative disc disease, fractured tailbone, fractured pelvis and fractured vertebrae's all in the same location of my spina bifida so they can't do anything for me, I have always been treated like I am a lier or I made it all up, I have been told by doctors that the only thing that they want me to do is to walk the best I can, that's all I am aloud to do, I have been told that I don't belong most of my life, so I grew up playing alone, I now use a walker and I have a cane to get around, but it would be a blessing to have a friend who can relate or understand would be so nice

[elizabethhannahmiller]

Thank you for this. I'm 5 months pregnant & we just found out that our daughter more than likely has Spina Bifida Occulta. This has really helped me.

[justinsoto]

My daughter who isn't born yet was diagnosed yesterday when her mom was getting her test results on my daughter's health

[vasylms]

I also have spina bifida occulta and everything is fine. I work, travel a lot, going to the gym, walk etc
Don't have any complaints :)
Peace ✌️

[lovellecampbell]

I have mylomeningocele spina bifida myself. Thank you for sharing. I learned at a very young age that life was tough but not impossible. I was very independent up until about 12 years ago.i got very sick because my doctor was not listening to me

[Shannonbarnesdr]

you say its okay to be different, all the while you worked your butt off to be normal and make your disability ' 'invisible'' and not 'disabling'' to you in any way. you are not proof of its okay to be different, you are proof that IN SOME CASES spina bifida can be over come and the disabling aspect of it can be minimized. again, in certain cases. you are extremely fortunate, so many folks with SB really are very limited in many ways. you got very lucky.

[elcommanderx]

I also have spina bifida myelomeningocele, and im a walker too, just like you.

[Backstreetfanlife]

I have this EXACT form of spina bifida and I can so relate to this

[Kevin-krkh]

I completely get where he is coming from i have the same and my walking hasn’t been great I’ve had multiple operations to correct my legs and I never got it and this helps that it wasn’t just me.

[windblade]

Am 18 and I was premature when I was younger and I have special needs I am globally delay as well but I do love comics and Anime and hanging out with family and friends and I love sports my favourite sport is hockey and soccer it's very awesome. 😀😀🙂

[Rock_N_Roll_Stories]

I have Spina bifida too. It sucks. I was born to walk but then I hit that growth spurt and I have been in a wheelchair for the last 12 years

[mrodriguezangel]

I’m 39 and got occulta thanks for the inspiration

[ruthmarquez]

Hey i would like to ask a few questions to the video guy.

[taitanocabesa]

I also have spinal bithia. This video damn near made my soul cry. My scar is on my upper body thou, however that not the point 😂. You get it. Thank you

[jalyhnwa]

I'm 24, diagnosed with spina, bifida, occulta and spondylosis last year. It was really annoying when the physical therapist acted like I was too young to have it and that maybe my doctors were wrong. I literally had three x-rays dude, and osteoarthritis. Being young with this stuff is definitely a struggle cause nobody expects it

[gmg]

Dude this is all depressing and all but we all get through it as being a 19 year old with this I had a cable to help me walk a shunt a tube to help with the hydrocephalus and other brain leakage

[higherpower]

Can you get disability for it if it causes autism? I believe I have meningocele and had a birth mark with sack and it was really sensitive to touch like all my nerves were in it. I got scratched in the back on it one time and was rolling around on the ground in pain like it was cut open with a knife