Living with Spina Bifida; an invisible disorder

Рет қаралды 15,736

4 жыл бұрын

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Пікірлер: 46

@corinnehawkins8 Жыл бұрын

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

@ashleycole1010 2 жыл бұрын

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

@Manderz89 Жыл бұрын

It’s not invisible to everyone people definitely notice that something is wrong with me because of the way I walk

@joellebaker9585 Жыл бұрын

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

@Sweetmama4J Жыл бұрын

Hi Joelle! There’s a whole community of people who would love to come alongside you and encourage you. Check out “Joni and Friends” either online or on KZfaq. 😊 Hope you have a great day today!

@lovellecampbell730 8 ай бұрын

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

@elizabethhannahmiller Күн бұрын

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.

@Shannonbarnesdr1 Жыл бұрын

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.

@jazmynhenderson16 Ай бұрын

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

@elcommanderx3163 8 ай бұрын

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

@jennamartin5913 3 жыл бұрын

Spina Bifida is definitely not invisible

@brynnamckinzie4519 3 жыл бұрын

It can be considered as invisible because not everyone that has it have noticeable symptoms. I have myelomeningocele just like him, but you would never know just by looking at me. I have been confronted in parking lots because I'm handicapped parking in handicapped spots, yet I look like I can walk just fine.

@jennamartin5913 3 жыл бұрын

@@brynnamckinzie4519 gotcha yup I agree….. I have milomeningocele too…….. I’m in a wheelchair and used to use crutches and braces

@unicornanddolphin1160 2 жыл бұрын

@@jennamartin5913 me too! 🙂❤️

@ashleywurtz2505 2 жыл бұрын

It definitely is and can be. We are not all the same yet living with the same diagnosis

@joellebaker9585 Жыл бұрын

When I mention that I was born with hydrocephalus and spina bifida people say that I am full of it, they say that if I was born with it I would be either retarded or dead trying to explain is impossible, I had one woman that assumes that I am always drunk cause of the way I walk, I have been told that I don't belong or say that I am not family cause of what I was born with, I find some people are so mean they say that I am a freak, treat me like i have some kind of disease they will actually cross the road if they see me, so now I barely go out and I keep to myself I have been treated like this my whole life, I try to not let it bother me so I listen to music to help me feel better

@justinsoto3891 2 жыл бұрын

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

@Sweetmama4J Жыл бұрын

Hope your daughter is doing well and you are well too! Just prayed for you that God would send His healing to your daughter and you! Hey, look up this guy on KZfaq - Nick Vujicic He doesn’t have spina bifida but he was born without arms and legs and you need to hear him speak! He’s really interesting. God has really blessed his life! May God bless you and your daughter, too!

@vasylms2459 27 күн бұрын

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 ✌️

@elizabethhannahmiller Күн бұрын

Thank you for this :)

@donreinke5863 22 күн бұрын

From what Ive seen its seldom invisible. People Ive seen or met are in wheelchairs or have a very noticeable way of walking, sometimes with crutches or braces.

@Barbie_All_The_Way Жыл бұрын

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

@akashkhinchi1452 3 ай бұрын

Were you able to walk in Initial years of your life ? What happened that you stopped walking ??

@lindseysanders3656 Ай бұрын

Did you develop tethered cord?

@windblade1205 2 жыл бұрын

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. 😀😀🙂

@ashleywurtz2505 2 жыл бұрын

I would love to connect and collaborate! I too am a walking invisible body of many invisible disabilities, a miracle, a single mother with a complicated social and medical history as well as the ultimate miracle of living with myelomengenocile and giving birth to a healthy baby boy who is now almost 13 years old. We want more than anything to be accepted by society and link with other like us. - Ashley Wurtz Unorthodox Olympic Model

@Rskt4thbskt Жыл бұрын

I'm in the same boat I have spina bifida but I have lost both parents and now I. Going through it alone 😔

@Sweetmama4J Жыл бұрын

Sorry to hear you lost both of your parents, Matt. That’s really hard. Keep going. You are never alone! Jesus says, “I will never leave you nor forsake you.” That’s in the Bible in the book of Matthew. 😉😊 If you don’t know Him yet, you need to reach out and start seeking (look for, go after) Him. He promises in His Word - if you search for Me with all your heart, you’ll find Me. ❤ He’s really good! His love and comfort surpass any person’s love because He loves wholly, completely, mercifully. His love doesn’t depend on how good you are or how talented or lovely you are. Also, His love goes with you everywhere! And He’s really cool with the way He shows it. I have seen His love notes for me everywhere and it brings a deep comfort that you can’t get anywhere else! I promise! He’s awesome! He knows absolutely everything about you and still cares for you with a pure and sincere love. Nobody loves like Him! 😁 “For God so loved the world that He gave His only begotten Son, that whoever believes in Him will not perish but have everlasting life.” John 3:16 Look up this guy on KZfaq - Nick vujicic He will lead you to Jesus ❤

@taitanocabesa Жыл бұрын

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

@mrodriguezangel1 Жыл бұрын

I’m 39 and got occulta thanks for the inspiration

@serenity2110 Жыл бұрын

I have occulta too. I just found out at the age of 19 but as years go on I have more and more pain, leg pain, pain in back when laying down. My question is they say occulta is “mild” do you experience bad pain ? I can barely work or lift

@mrodriguezangel1 Жыл бұрын

@@serenity2110 oh yea I got the pain especially in the legs and hips area as well as the lower back

@catuirahomehansonii6009 Ай бұрын

@@serenity2110….hi, my daughter just got diagnosed at 16 after severe lower back pains. How are you doing?

@ruthmarquez6815 2 жыл бұрын

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

@gmg9010 3 жыл бұрын

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

@famoussnips1434 3 жыл бұрын

😂 I know right I think I’m living quite fine and fit in

@gmg9010 3 жыл бұрын

@@famoussnips1434 I wasn’t being mean just saying that we all have our problems and if we try we can get through them

@manuelcapel1213 3 жыл бұрын

Hi if you read me. I have a question.how do you get along with neurogenic bowel and even constipation. Sometimes i can't walk

@ashleycole1010 2 жыл бұрын

Bowel problems are difficult. I wear diapers and take meds at noon to stop loose bowels. Slow down on dairy products which really contribute to our problems being worse.