Hi everyone,
I was wondering how many women with Spina Bifida has anemia and no longer menstruating? I have been anemic for a few years and there is no known cause for it. I also had a colonoscopy and EGD done and they came out great.
I just got an iron infusion a few days ago and feel much better. I was wondering if any other women with Spina bifida have had this experience?
Does anyone else who doesn’t drive, have family that takes full advantage of the fact you don’t drive?
For instance, you need a ride to go somewhere or get something done and it’s always “oh after I finish this” or something to that affect.
Never being able to do anything on your own time because they wait until the end of the day, knowing places are closed and then acting surprised when you’re upset.
Anyone else?
Hello! For some background, I am AMAB, and I have been suffering from SB for... well, my 22 years of life. To be honest, I guess I didn't really know thats what I was suffering from for the longest time. I knew I HAD SB, but for some reason I thought it was the same as a tethered spinal cord lol. I had surgery when I was 13 months old to fix my tethered spinal cord, and so far I have had no walking problems. They said it was a mild condition of SB, and I probably won't have walking issues as I got older.
However, for some reason, it seems like my condition is worsening. I have been going to a chiropractor, but I have recently learnt that only makes SB worse, or at the very least, doesn't do anything. I haven't seen a doctor yet, but I guess im afraid I will eventually reach the point where I will need a wheelchair, or some form of mobility aid. Some days, my legs feel like jelly. Most days getting out of bed is hard, and when I sit down, I find it hard to get up.
Anyways, what should I do? I've been meaning to make a doctor's appointment, as I really haven't seen anybody about it since I was real young. In the meantime, what are some mobility aids that you can reccomend for somebody who is in my situation? I've been personally thinking of getting a cane for really bad days.
And another thing: could the doctors have been wrong? Will my Spina Bifida get worse as I age? I see people on here who so have to use wheelchairs, walkers, and other mobility aids. Will I eventually end up like that? Thank you all for your help, and sorry if this post is super messy. My mind is frazzled and I've been stressing...
If you’re the parent of a child with a disability, this piece is for you. I know the questions you’re asking because I’ve heard them my entire life. They’re questions that come from love, fear, and wanting the very best for your child. There isn’t a perfect roadmap, and no parent gets everything right. But sometimes the greatest gift you can give your child isn’t protecting them from every obstacle, it’s preparing them to face the world with confidence. I hope this conversation offers a different perspective from someone who has lived with a disability his entire life. And if you’re a parent who has questions, worries, or simply needs someone to talk to, my inbox is always open. I don’t have all the answers, but I’m happy to share my experiences and hopefully make the journey a little less overwhelming. You don’t have to figure it all out alone.
Parent: My child has a disability. What do I do?
Me: You do your best.
Parent: What if they never learn to walk?
Me: That’s okay. There are other ways to get around. Don’t let one limitation convince them life has to stop.
Parent: I’ll have to take care of them for the rest of their life.
Me: You don’t know that. There are programs, resources, and support systems. More importantly, there are skills you can teach them now that will help them care for themselves later.
Parent: How will they ever make friends?
Me: The same way any child does. Teach them how to talk to people, be kind, listen, and be themselves. Disability doesn’t stop friendship.
Parent: Who will ever love them?
Me: You will. Love them the way they deserve to be loved, and you’ll teach them what healthy love looks like when they find it themselves.
Parent: The world is such a mean place. How can I protect them?
Me: You can’t protect them forever. Instead, teach them how to stand back up when life knocks them down.
Parent: I need to make everything accessible at home.
Me: That’s a wonderful place to start. But they won’t spend their whole life at home. Teach them how to navigate a world that isn’t always accessible.
Parent: I need to find other parents like me so my child can be around kids just like them.
Me: Support is important. Just don’t let other parents’ fears become your own. And don’t let your child grow up believing they should only be friends with other disabled kids. Friendship has never depended on disability.
Parent: What do I do if other kids make fun of them?
Me: You do what you can. But even more importantly, build their confidence so they know their worth isn’t decided by someone else’s opinion.
Parent: What if I’m not around to feed them or help them get dressed?
Me: Then teach them while you are. One day you won’t be there, so prepare them to be independent, not dependent. Every skill they learn today is one less thing they’ll have to fear tomorrow.
Parent: What if I fail?
Me: No parent is perfect. You’ll make mistakes. We all do. Just love them, believe in them, and teach them the skills they’ll carry for the rest of their life.
They don’t need a perfect parent.
They just need one who prepares them to believe they can live their own life.
My daughter is 2 years old (32 months). She was born with tethered cord + dermal sinus tracts and had surgery when she was 6 days old because her lower back was basically open and we couldn’t risk infection. Even though she’s still having major issues with bowel movement, her bladder and low muscle tone, strength, sensation issues, etc, she’s come a far way 🥺💕
My question is about her feet. Without her AFOs on, she can't keep her right foot flat. She stands on the outside of her right foot. Both feet also turn inward, although that's actually improved a lot compared to when she first started standing/cruising. They used to cross over each other and she'd trip all the time, but that part has gotten much better, and she’s not wearing twister cables anymore. Has anyone else's child been like this? Did it get better as they got older? Did therapy and braces make a big difference, or was surgery eventually needed?
I know every kid is different. I'm just looking to hear from people who've actually been through it because I haven't found anyone talking about this specific issue. She also has a huge bunion on that side of her foot.
“Someone should be taking care of you.”
Why?
Because you saw a wheelchair?
I’m a grown man.
I have a career.
I pay my own bills.
I take care of myself just fine.
“How could they let someone like you work with kids?”
Someone like me?
The children don’t see a wheelchair.
They see someone who listens to them, laughs with them, teaches them, and believes in them.
Years of training, experience, and dedication disappear the moment you decide my disability tells you everything you need to know.
“Where are your parents?”
Probably living their own lives.
I’m living mine.
You can talk to me.
“Why don’t you make friends who are disabled like you?”
Take a second and replace the word disabled with a race, religion, or gender.
Does it still sound like an innocent question?
Or does it suddenly sound exactly like what it is…
Prejudice.
“Do you know so-and-so? They’re also in a wheelchair.”
No.
Because wheelchairs aren’t a community.
They’re a piece of equipment.
There is more to my identity than what I sit in.
“Who feeds you?”
“Who dresses you?”
“Who bathes you?”
Interesting…
I came here for a doctor’s appointment.
Yet somehow my biggest symptom became your curiosity.
Not about my health.
About whether you believed I was capable of living my own life.
These aren’t once-in-a-while comments.
They’re almost daily.
Questions.
Assumptions.
Conclusions.
Made before I’ve even had the chance to introduce myself.
And whenever I explain how exhausting it is…
The response is almost always the same.
“They’re just looking out for you.”
Looking out for me?
Or looking past me?
There’s a difference.
Concern asks.
Prejudice assumes.
Concern listens.
Prejudice decides.
Concern sees the person.
Prejudice only sees the disability.
Despite all of that…
I still wake up every morning.
I go to work.
I pay my bills.
I cook my meals.
I make my own decisions.
I build my own life.
Not because I’m trying to prove everyone wrong…
But because I stopped waiting for permission to prove myself right.
I’m not asking people to lower the bar.
I’m asking them to let me reach it before deciding I can’t.
Because the greatest limitation I’ve faced has never been my disability.
It’s been other people’s imagination.
The voices never come one at a time.
They attack all at once.
“You have to do better.”
“This isn’t enough.”
“This is garbage.”
I’m trying.
I’m doing the best I know how.
I’m using the tools I’ve worked so hard to learn, the skills I’ve spent years building, and the resources I can actually afford.
“Have you tried this app? It only costs $150.”
That’s a week’s worth of groceries for me.
You spend money without thinking.
I have to decide whether inspiration is worth skipping meals.
“You don’t want this badly enough. If you really cared, you’d suffer more.”
Suffer more?
Suffering is all I’ve ever known.
I’ve carried it since I was a kid.
I don’t need another lesson in pain.
I need a moment to breathe.
“You need to be more confident in your work. Think of all the kind things people have said about you.”
Kind things?
No one says them to my face.
I only hear about them after the conversation is over.
It’s hard to build confidence with compliments you never actually receive.
“This again? Aren’t you over it by now?”
How am I supposed to be over something I’ve never been allowed to heal from?
Every time I start putting the pieces back together, someone reminds me why they broke in the first place.
Sometimes I don’t need advice.
Sometimes I just need permission to feel what I’m feeling.
“You don’t know what real struggle looks like. You don’t know real pain.”
Maybe not yours.
But I know mine.
I know what it’s like to wonder if I’m enough.
I know what it’s like to crave a genuine compliment.
To wonder what unconditional love feels like.
To smile in public while quietly questioning my own worth.
Don’t tell me I don’t know pain.
I’ve lived with it long enough to recognize its voice before it even speaks.
“All you care about is making yourself look good.”
No.
If that were true, I would’ve stopped sharing my failures a long time ago.
I tell these stories because I don’t want someone else to spend years lost the way I was.
If my scars can become someone else’s map…
Then every wound was worth surviving.
The voices don’t stop.
They probably never will.
They still shout.
They still accuse.
They still tell me I’m not enough.
But after every battle, one voice grows just a little louder than the rest.
My own.
And for the first time…
I believe it.
So, I have probably asked this before, so sorry in advance. But I have SB, but I also have scoliosis and endometriosis, and I've had this radiating leg pain for a while now. I was prescribed a corset for the pain in my lower back, and my husband believes it will help with the leg pain too. But can anyone confirm having this pain from either condition, and so, which condition caused it? My childhood doctor told me that SB people can't get sciatica the same way as a normally functioning person due to the nerves affected by sb
I have read that barometric pressure causes some people discomfort. I have certainly found this to be the case for me as I've gotten older.
My cognition slows, and often is accompanied with a migraine. I am on my second month of trialing Emgality for the migraines. I did receive some relief.
I was wondering what some of your experiences, and step ins are if this also applies to you.
I have also found that taking a B Complex supplement is helpful, though not for very long. If you have found any relief that is pharma-adjacent, I would love to know.
I've been lurking here for a while reading posts and interactions to see if this is the right community to seek some support and guidance.
I'm cis-male, 43, T12-L1 incomplete manual wheelchair user.
I grew up playing sports. Excelled at them. I played basketball for the University of Oklahoma and still reside not far from there.
I have been extremely fortunate most of my life. Lately, shit's been really hard. It began with bladder issues. Recurrent UTI's. I found a solution, which luckily was just behavior habits with what I was consuming.
Where things have gone awry that I haven't found solutions for is the bowel issues that began about 5-6 years ago.
I have digi-stemmed since about age 6. By the time I began exercising and playing sports in my teens, even that wasn't always necessary. Now, I don't have conscious control, but I have sensation enough to know when I need to go and how urgently.
In hindsight, the bladder/bowel thing happened in pretty close proximity in time. I don't know if, or how they may be related. For a long while now, stemming alone does not result in a BM. Only the use of dulcolax + stemming does. It takes FOREVER. At least in comparison to my earlier experiences, and I hate it. Additionally, I always feel urgency, and do not pass gas voluntarily like I used to leading to constant abdominal discomfort.
I have been a hobbyist, sometimes paid wildlife photographer for years, and this has wreaked absolute havoc on my lifestyle. Being in nature is how I manage my mental health. I feel like I'm losing the things that mean a lot to me and that which makes me...me.
I have never wanted an ostomy. Doctors just throw laxatives or stimulants at me which are too aggressive and change nothing. I am planning to see a rehab doctor who can hopefully guide me to some therapies.
Does anyone have a similar experience, and did you find any solutions to recover your independence?
I just wanted to take the time to ask if others were offended by my most recent posts? Several times I have reached out in the Spina Bifida community whether that be here, on other social media platforms, and even in person. Multiple times others have been offended by what I have said and it looks like my last post is being downvoted quite a bit and there is also one guy who has commented multiple times on those posts. My goal has been to reach a level of understanding and with my recent writing posts I wanted to show that I have felt what many have felt in the community. If I have said was offensive please let me know and I’ll stop sharing.
So I’m posting on Reddit for the first time because idk I feel helpless I’m a 27 year old male with spina bifida this is going to be a little bit of a just a running Sentence with zero grammar but I’m fortunate enough to be able to walk but like barley always getting wounds on my feet from working I work in a “warehouse”
Club foot all the surgery’s you could think of to tethored cord to club foot to cathing daily out of my belly button when I was younger I was a lot healthier but I’ve been on my own since 12 hence not taking care of my self properly I dropped out of school for family reasons and just been surviving since I got a decent job a beautiful wife kids a home and a mortgage I worked for years but I start missing work a lot lately and my health has just been at well feels like a decline I always had urinary issues but never bowel until this last year I can’t ever hold my Bowels and have head steady diahrea for a year “Causes me to miss work” and having spina bifida I get frequent UTis Foot wounds and everything else you can think of that comes with spina bifida I have had over 12 surgeries and I feel like all of this has taken a toll on my body when I was late teens early 20s I loved body building so I exercised a lot made me feel geat but as I’m getting older I can’t keep up with it anymore with a full time job I also Can’t drive Because of the spina bifida I have no feeling from the knees down stick like legs from
Knees down due to atrophy I always used my quads to mainly walk so I would need resources like hand ones. Or something but I just don’t have the money I miss a lot work for Drs apt Specialist after specialist surgery after surgery and that’s my story I’m stuck and feel like everything is falling apart And idk what I’m asking for on this Wether that’s advice a opportunity but all of this has a certain shame to me and I have no one to ask for help I’ve tried my whole life and it just feels like it’s all gonna be for nothing soon I’m so broke and in debt it’s crazy I have SSi hitting me up for money they gave me While I was a disabled collecting in my early adult hood but I wanted better for my family so I went to work But idk someone to talk to will be nice SORRY IF THIS IS TOO MUCH
Younger me: Hey, grown-up me… is adult life everything we dreamed it would be?
Current me: No. It’s actually better.
Younger me: Wait… you mean we’re rich?!
Current me: No. At least not in the monetary sense.
Younger me: Oh… so we’re a writer?
Current me: We love to write. It’s how we make sense of our thoughts and feelings. But no, we don’t get paid for it.
Younger me: Oh. Do we save people?
Current me: You could say that. We spend a lot of time listening to people, encouraging them, and helping them through difficult moments. But again, it’s not something we’re paid for.
Younger me: Well, if we’re not a writer and we’re not saving people, what do we do for work?
Current me: We work with kids like us. We help them learn the skills we had to figure out on our own.
Younger me: That sounds so cool! I bet we make a lot of money doing that!
Current me: We make enough. But it was never about the money.
Younger me: Then what was it about?
Current me: When you were younger, there were so many moments you wished someone truly understood you… someone who believed in you, listened to you, and showed you what was possible.
Younger me: Yeah…
Current me: We grew up to become that person. Not just for ourselves, but for other kids too.
Silence.
Younger me: I never thought success would look like that.
Current me: Neither did I. I thought success meant money, recognition, or having everyone know our name. But it turns out the greatest success is making one person’s life a little better than it was yesterday.
Younger me: I don’t think I understand.
Current me: You don’t have to yet. One day you will… and when you do, you’ll realize we became exactly who we needed all along. And you’ll be happier than you ever imagined.
I’ve done some google searches on this and I’m still left with some questions so I figured I’d ask them here:
I underwent tethered cord surgery when I was like seven, so I have almost no recollection of why that surgery was done or if I had any symptoms.
— can tethered cord symptom return?
— and if so: should you get checked regularly for that as an adult? (I ask this because I find it really hard to pinpoint changes that could be symptoms ((probably a good sign)), but like — certain areas in my legs have always been numb, but I can’t say for certain if they’re expanding, I also got some complications with my hip last year ((needed hip replacement)) which probably caused some muscle athrophy, but I have no idea when that got really bad and if it could be related to neuro issues, because it was so gradual. does this make sense?)
— google searches separates adult symptoms from symptoms in children. but things like fat pouches — i still have that and i don’t think it ever left after the surgery i had as a child. though, from my knowledge, the surgery was successful.
and last: how do you manage all these specialists as an adult? i used to have a “team” of doctors monitoring me as a child, but as far as i know, there’s no teams like that for adults? I haven’t seen any spine specialist in like 10 years or so because I have no back issues.
Ladies with SB, I’m currently in the hospital do a kidney infection PLUS having issues with my bladder refluxing into my kidneys particularly the right one and it’s extremely painful. I have always had reflux issues my entire life but this time is particularly worse. The right kidney is retaining fluid and won’t “drain” out. I have a stent in my left ureter and have had it for about 14 years and rarely have issues with that side. They’re talking about possibly placing one in the right side tomorrow as well. I am 16 almost 17 weeks pregnant. I know this is kinda niche and a longer shot, but have any of you lovely ladies happened to have this procedure or honestly any procedure while pregnant? How did it go and how did your baby handle it? They’ve reassured me it’s safe but this first time mama can’t help but still worry
Younger me: Hi, grown-up me. I have a question.
Current me: Okay… what’s up?
Younger me: You’re not married, right?
Current me: No… I’m not.
Younger me: So that means you don’t have kids either.
Current me: No… I don’t have kids.
Younger me: Oh…
silence
Younger me: I always thought we’d have a lot by now.
Current me: Yeah… I know.
Younger me: So… what happened?
Current me: I’m not sure I want kids.
Younger me: What? Why?
Current me: It’s a lot. The responsibility. The pressure. I’m not sure I could handle it.
Younger me: I don’t believe you.
Current me: What do you mean?
Younger me: That’s not the real reason.
silence
Younger me: Something else is holding you back.
Current me: …
Younger me: I knew it.
silence
Younger me: Tell me. What are you really afraid of?
Current me: I just…
Younger me: You’ve built a life. You have a career. People love you. You spend every day taking care of other people. So what is it?
Current me: …
Current me: It’s Dad.
silence
Younger me: Dad?
Current me: I don’t want to become him.
Younger me: Why?
Current me: Because I’ve seen what he can become.
He drinks.
He gambles.
And I’ve seen what that does to a family.
Younger me: But you’re not him.
Current me: I know…
But it doesn’t always feel that simple.
Younger me: Do our brothers and sisters have kids?
Current me: Yeah… most of them do.
Younger me: And are they like him?
Current me: No.
Younger me: Are they good parents?
Current me: Yeah.
They really are.
Younger me: Then I think you already have your answer.
Current me: …
Younger me: You work with kids, right?
Current me: Yeah.
Younger me: And they love you?
Current me: They do.
They get excited when I show up.
They look forward to seeing me every day.
Younger me: Then listen to me.
If children who aren’t even yours can love you like that…
Imagine how your own child would look at you.
silence
Current me: …
Yeah.
I never thought about it that way.
Younger me: I don’t really know what adulthood is supposed to look like.
But I do know this.
We became someone people trust.
Someone people feel safe with.
Someone who shows up.
Isn’t that what a child really needs?
Current me: …
Yeah.
I think it is.
Younger me: Then maybe you’re closer than you think.
You’ve already built the kind of man a child would be proud to call “Dad.”
Maybe the only thing missing…
is believing it yourself.
I’ve been a manual ultralight wheelchair user for the past four years. In about a year, I will qualify for an updated or new mobility device through my state insurance and have been starting to think about it. I absolutely love my chair, there’s almost nothing I’d change about it, and it’s still in great condition. But I have had nothing but drama with the SmartDrive, and it’s many bugs and recalls. While I want to be an active manual user for as long as possible, and don’t currently have the funds for an accessible van, I’m wondering if I should try to get a power chair covered next year.
Part of me is worried that my health insurance will not cover such a huge expense down the road (if they even will next year, no guarantee, but my manual and smart drive were fully covered 4 yrs ago), when I truly need it, and I will become unnecessarily housebound and decline in health from lack of mobility. Being a manual chair user is not easy for me physically and there are many situations I can’t handle in my chair that I could if I were in a power chair. My condition is also degenerative and its likely if not assured that I will eventually 100% need a power chair, I just don’t know when. I’m 40 with spina bifida occulta, recurrent tethered cord, syringomyelia and heds, so I‘m looking at a decade maybe or less of this level of mobility? There’s no way to know. As of now my shoulders and arms can only handle limited distances and a crooked sidewalk, overly steep ramp or grass absolutely wipes me out. Getting my chair in and out of the car is exhausting and risks further injury every time.
On the other hand, I’m not sure I would qualify for it if I don’t technically need it yet for basic ADLs and am getting around in my manual. I also drive still and that independence is a big deal for me as a single mom. I don’t know how I would fund an accessible van and there’s no way a power chair could fit in my SUV.
Wondering if anyone else has had experience with getting a power chair as a manual chair user that’s struggling but still getting around and if this was a good idea or if insurance would not cover it. I don’t think it would be as useful for me to request a new ultralight manual when my current one is so nearly perfect and I already have a less great backup for flying/travel (which I don’t do anyway). I’m probably overthinking it but curious if anyone has been in a similar boat.
Younger Me: So how do I get rid of these bad thoughts about myself?
Me: It’s not about getting rid of them. It’s about making the positive thoughts louder.
Silence.
Younger Me: But the bad thoughts are there all the time.
Me: I know.
Younger Me: Then how am I supposed to ignore them?
Me: You don’t ignore them. You start small. Tell yourself you’re worth it. Tell yourself that one day you’ll become the person you want to be.
Younger Me: There is so much I want.
Me: Like what?
Younger Me: I want to be cool. I want friends. I want to do fun things.
Me: You can have all of those things.
Younger Me: Really?
Me: Really. But first, you have to let go of your ideas of what those things mean.
Younger Me: I don’t understand.
Me: Let’s start with friends. What makes someone a friend?
Younger Me: Someone you hang out with and talk to.
Me: Is that all?
Younger Me: Yeah. What else is there?
Me: Friendship is having common ground. Similar hobbies, interests, and experiences. But it’s also being different enough that you can learn from each other. A friend is someone you support, and someone who supports you.
Silence.
Younger Me: I never thought of it like that.
Me: You will.
Younger Me: So how do I become cool enough to get friends?
Me: It’s not about being cool.
Younger Me: It’s not?
Me: No. It’s about becoming the kind of person people want to be around. Someone kind. Someone caring. Someone who takes an interest in others.
Pause.
Me: I can’t stress that last one enough.
Younger Me: But what do I say? What do I talk about? I’m just a kid in a wheelchair.
Me: You’re not “just” anything.
Younger Me: What do you mean?
Me: You’re a kid who loves video games. You like reading. You like writing. You have ideas, opinions, dreams, and stories. There are people out there who like those things too.
Younger Me: So that’s what I talk about?
Me: That’s where you start.
Silence.
Younger Me: You make it sound easy.
Me: I know.
Younger Me: Is it?
Me: No. It’s hard. Sometimes you’ll feel awkward. Sometimes you’ll say the wrong thing. Sometimes people won’t like you.
Younger Me: Then what?
Me: Then you keep trying.
Younger Me: How do you know it’ll work?
Me: Because I’m you.
Silence.
Younger Me: So I really do make friends?
Me: More than you think.
Younger Me: And I get to do fun things?
Me: More than you can imagine.
Younger Me: What about the bad thoughts?
Me: They’ll still show up sometimes.
Younger Me: Then what changes?
Me: One day you’ll stop believing everything they say.
Long silence.
Younger Me: Can I ask you more questions later?
Me: Anytime.
Younger Me: Okay.
Me: For now, start with friends.
Younger Me: Okay.
Who else with a fused spine has a hard time getting up inclines and how do you overcome it?
I’m disabled. A woman. I recently made the grueling decision to not have children for their own sake. I can’t provide them with a life that they deserve.
When I made that decision, I started loving my hypothetical children like crazy.
I know that they never existed, but I didn’t realize that I could love someone enough to give them up.
They would have been my kids, so I had to act as their protector before they could ever exist.
I’m struggling… I miss them somehow. I think I learned how to love like a mother…