Spina Bifida

[karen547]

i was born with Spina Bifida, and diagnosed with ESRD at age 13. Cancer also runs in my family --- YEESH







EDITED: Changed Subject Title - Sluff/ Admin

[paris]

Karen, you certainly have a lot to deal with.   I am so sorry for all you are going through.  My husband is the only sibling of 4 to not have cancer; his mother, grandmother, 3 aunts died from cancer---feels like a ticking time bomb.  I am sure you must feel like you have been dealt a bad hand.  Sending you hugs

[angela515]

I don't have Spina Bifida, but I just wanna let you know I know how it feels to be sick so young, I have SLE (Lupus) and it came out at age 12.

  Girl.

[karen547]

Thx. I am much more fortunate than some with SB . I walk, and do not have a huge scar on my back. I wear leg braces is all.

[Ohio Buckeye]

Yesterday I saw a gal from high school I hadn't seen in years.
Her daughter is 29 and has cerebral palsy I think it is.
In a wheelchair, has to be fed, wears a diaper.
Has a computer on her wheelchair.
She is very small and when she was tired the mother wrapped her
in a blanket and held her like holding a baby.  I was really touched
by how she laughed and talked with her and you could easily see how
much she was loved.  Not much of a life.  The mother's life is pretty
much devoted to her care.  Makes one feel so very fortunate.

[goofynina]

Thank you for sharing that O.B.  I think sometimes we are so wrapped up in all our ailments we just dont realize it could be much worse.  Thank you for reminding me (and hopefully others) that life isn't really THAT bad.   

[KT0930]

My college roommate had spina bifida, but she didn't really talk about it much, so I really don't know when it showed up or "how bad" it was. I did see the scar on her back one time, and she had to wear adult diapers. She didn't have braces on her legs, but they were malformed, a bit. I think she tried really hard not to let it affect her day-to-day life, but her parents (when they were visiting) tended to treat her as a child and as fragile...maybe that was just the way they would be with any child of their's, though.

[Hawkeye]

I walk, and do not have a huge scar on my back. I wear leg braces is all.

You are one of the luckier ones then.  My little brother has SB and he can't walk and has a huge scar on his back.  Spent most of his younger life in and out of Shriners Hospital in and stuck in casts during his summers trying to "fix" his clubbed feet.

[draven]

just saw this thread. i was born with Spina bifida. Doctors said i would never be able to walk. my brother and sisters ignored the docs and taught me to walk just fine. no calipers or braces.I'm not able to run very fast and i wont be joining the Olympics anytime soon. but i am very thankful.

only downside was the eventual kidney problems i developed.

[nursewratchet]

I walk, and do not have a huge scar on my back. I wear leg braces is all.

You are one of the luckier ones then.  My little brother has SB and he can't walk and has a huge scar on his back.  Spent most of his younger life in and out of Shriners Hospital in and stuck in casts during his summers trying to "fix" his clubbed feet.
[/quote    ]      YEAAAHHHH for Shriners Hospitals.   My Daughter was born with Club feet, she wore casts for a year when she was a baby.   No SB though, that can be tough.  "It's always something"

[karen547]

I feel very fortunate still. I have a great support system

[pelagia]

and you have a great attitude too! 

[Brianna!]

I also have a mild fomr of spina bifida. I can walk, but I do have the scar on my back. =[ I feel very grateful, that I don't have a severe form of it.

[conkling86]

I was also born with Spina Bifida, I am paralyzed from the waist down, but I  do not have a shunt because the Dr.s at LSU didn't think it was worth their time to put a shunt in...I am grateful to God for their laziness. I was born with one dead kidney...sort of...Part of the left one was not working and it kind of merged with the right one and now its technically a horseshoe kidney. I was told from a very early age that I would have to start dialysis but I was lucky enough to make it to age 24 before I started. I am now 30 and doing well on dialysis 3 times a week for 3 hours.