Hey Sarah,  Welcome to the group and congratulations on your upcoming birth! My daughter was born in May with SB. It was diagnosed when they found fluid...
Hello everyone, My name is Shana. I'm 23 years old and I have Spina Bifida. My SB is at my lower back. I have some feeling in my legs. I can't feel from just...
Congrats, Sarah! My BIGGEST piece of advice would be to make a priority to attend the SBAA national conference every June. It's going to be in Cincinnati, OH...
I have a question about something I am clueless about. Non-profits. Does anyone have any experience with running a non-profit group? I was thinking the...
Welcome Shana! My name is Summer. I am 26. I live in Florida. I of course have spina bifida. At birth I was a T10 level with no feeling from hips down. I am...
Hi Summer. I think my SB is L3-L4 maybe. Not really sure. I have had about 20 surgeries. I hope I won't have anymore. The last surgery I had was when I was 18....
Hi Sarah,' I have a 10 year old little girl named Kalle that was born with SB. The best advice I can give you is question the doctors, learn as much as you...
Summer, My daughter is having tethered cord surgery on Tuesday. If you dont mind me asking what happened with your tethered cord surgery for you to lose that...
Absolutely no one knows. We never really got a clear answer from the doctor. He was fired from the hospital shortly after due to other reasons. From what we...
Thanks everybody, So far I've seen the PNP at the spina bifida clinic here and she recommended a few doctors, all in the same clinic I think, which are...
The 1st year is when you need it most! And from what you said here, you'll love all the vendors they have at conference! A lot of "well isn't that cool! I...
Hi Amanda, First of all Spina Bifida is not a disease. It is a birth defect where the spine doesn't form properly. There are many very good and informative ...
Oh my gosh... a DISEASE??? Reading your email literally made me physically ill... Just check out www.sbaa.org. From: spinabifidacentral@ yahoogroups. com ...
Sara, You don't have to be rude about it. All you can do is educate people about it. Some people do not understand what it is. So please do not act like this...
Come on Guys, give the student a break! I'm sure she didn't mean any harm by calling the Spina Bifida "Defect", a Disease. A lot of people are ignorant as to...
It doesn't matter. She is a college student. Give the girl a break. She is trying to educate herself. You don't have to be rude about it. Summer In a message...
I've yet to meet a person (especially one w/ SB in the family!) that thinks any birth defect is a disease. It might be different if she knew no one w/ SB, but...
Sara, please don't be hateful. If you are a young student & have had good health and are just learning you may not know. This poor person came here for help...
I know a lot of people that say it that way. Doesn't mean they should be treated like they are bad and stupid. Summer In a message dated 11/9/2009 6:18:57 P.M....
Yes it has! Judge not less yee be judged! May have been a mistake or misinformation but in my opinion, it was obviously well intended! Why make a...
first off it was a mistake. She is reaching out to us to assist in education we should be welcoming and educating not getting angry and being rude. To answer...
I am looking for a hand trike can anyone guide me in the right direction! It is for my 3 year old son! [Non-text portions of this message have been removed]...
Check to see if you have an AMBUCKS chapter in your state. They are a wonderful non profit organization that supplies these bikes to children. My son is on...
Hi all, long time reader, new poster. Recently my 4 1/2 yr old son got botox shots in his bladder to try to lower the pressure. After 6 weeks, we went back...
Just make sure they explain it to you what they are going to do and what the plan is. We didn't get that and I had a weird feeling about. Turns out my gut...
You mean a mitrofanoff? That would be where you cath through your belly button. I love mine. I had it separate from the bladder augmentation, but it is better...
why not just talk to your doctor about getting an urostomy that way the urine would go into a bag and it would need emptying every couple of hrs depending on...
Urostomies are old. Doctors don't like doing them on young kids now. So, the mitrofanoff is the best thing these days. Really simple to use that doesn't...
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