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  #1  
Old 07-16-2014, 05:56 PM
elmarianexx
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Default Your experience with Spina Bifida.

When were you diagnosed with spina bifida? How did it change your life? How do you try to cure it?
Share your experience with spina bifida here at this topic.
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  #2  
Old 09-06-2014, 10:39 AM
elmarianexx
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I am going to boost this topic because it didn't get any responds and I think that people would like to share their personal experiences with Spina Bifida isn't that right?
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  #3  
Old 09-08-2014, 10:34 AM
GemmaRowlands
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I don't have it myself - I am involved in this forum because I have a close friend with the condition and I want to help her as much as possible. She is actually coping remarkably well, and is always commenting on how things could have been so much worse for her. In fact, she is turning it into a positive thing in her life, because she has now devoted a lot of her time to campaigning for pregnant women to be given free folic acid supplements from their doctor, as those with a low income might not be able to purchase them, and the statistics show that the risk of SB is highly reduced if the mother takes these during pregnancy. So she has turned her life around for the better, and she always says that she is thankful that she has something to fight for, because she sees so many "healthy" people who just don't have that same drive for life as she does.
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Old 06-13-2018, 10:50 PM
Cynderraven Cynderraven is offline
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Unhappy RE: Your experience with Spina Bifida

I'm hoping someone will see this, it doesn't seem like the group has been used in a while. Even though my parents weren't told when I was born that I had spina bifida, scoliosis, and one kidney a third of the size of the other and deformed, they were told that I only had part of a colon. I was operated on at three weeks old, because that's when I was finally 5 lbs, I was born at 3.5 lbs. I found out about the rest when I was about 30 years old because my right hip hurt so much I couldn't walk on it anymore. I've always had problems with my back, especially during my two pregnancies. I've contacted the children's hospital where I was transferred to because the hospital I was born at wasn't equipped to deal with my issues, so I was transferred to one of the childrens hospitals. If I sound bitter, it's because I am. I got a phone call yesterday because now they want to test me for congenital heart failure. I've contacted the hospital and asked for my complete file to find out if there are any other surprises I should look out for. I don't understand how or why the hospital wouldn't tell my parents, there had to be some kind of x-ray or some test for them to see that I missing part of my colon, and if it was an x-ray, would they have not seen the two vertebrae that are open and the twisted spine?? I've seen my spine on an x-ray, it's a train wreck!! LOL.... I know I used to have to go to the hospital for all kinds of tests, to be poked and prodded. Different doctors from I don't know where would want to exam me, so I'd be put in the hospital for 10 days at a time. I know one doctor took my case to a medical convention and I'm in some medical book. But I'm feeling a little bitter for all the information I wish I would have been given. My father passed 22 years ago, but my mother was alive when I found everything out and she was shocked by what I told her and had this incredibly confused look on her face when I told her what they found. I guess part of my just wanted to vent somewhere where people understood the frustrations of Spina Bifida. Thanks!!
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