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Old 08-27-2008, 06:09 PM
Jaci Jaci is offline
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Default Just Diagnosed

I am a 34 year old female and today I was told that I have Spina Bifia.* I have heard of this but virtually know nothing about it.* Is there any websites or resources that many of you have referred to in order to help you understand how this happens?

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Old 09-03-2008, 03:18 PM
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Default Just Diagnosed

Hi Jaci,

Being diagnosed as an adult is more common than you might think.* Sometimes when a baby is born with sbo, there are telltale signs like an indentation or dimple on the spine, a patch of hair or skin tag (like a birthmark).

Many people with spina bifida occulta (sbo), which is the least severe form never have any issues and others find out after their back has been x-rayed, MRI, CTscan, etc, or they become symptomatic.

For a complete information package on sbo, please contact the Association at <a target="_blank" href= "mailtorovincial@sbhao.on.ca">provincial@sbhao.o n.ca</A>

Shauna Beaudoin, Information & Services Coordinator, SB&H Association of Ontario

*

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Old 10-07-2013, 09:00 PM
misty7 misty7 is offline
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The National Resource Center has been a big help to me. There you will be able to get a lot of information on any concerns you may have about being newly diagnosed. You get your questions answers along with finding a group in your area for support. I hope that this will help you in getting what you need while going through this.
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Old 10-08-2013, 08:10 PM
dailypost1 dailypost1 is offline
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Default MayoClinic

MayoClinic provides some of the most updated information about any particular diseases for the health community. In terms of finding information on Spina Bifia, MayClinic provides ten short sections that each contain information about the disease. The significant reason why this website is reliable and credible is the editorial staff is made up of medical doctors with professional backgrounds and licenses. That means the advise and information users received is accredited by professionals and health agencies.
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Old 10-08-2013, 08:50 PM
dailypost1 dailypost1 is offline
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Default The National Institute of Neurological Disorders and Stroke

The National Institute of Neurological Disorders and Stroke also contains great information about Spina Bifada. What is interesting about this website is it actually has a table of contents beginning with an introduction and includes explanation of what Spina Bifida is and etc. The National Institute of Neurological Disorders and Stroke is a current government website that means it is legitimate and updated. You can find answers to your questions by logging into this website.
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Old 10-14-2013, 08:56 PM
nhsososo4 nhsososo4 is offline
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I think our members have given you the best websites you can find about the disorder. Also very importantly, try to find support groups within your community. There is nothing better than that. Having people who will share similar stories to yours will do you a lot of good and you will realise that you are not alone. You will also get the courage to face the world.

Most of the community centres, have highly qualified personnel, who are prepared to be with you all the way. By the end of a few weeks you would have found a new family and have accepted your disorder. Always remember its not a curse but Gods plan. You may be put in this situation to help other people who can not help themselves, therefore please embrace it.
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Old 10-22-2013, 06:59 PM
SBbengalsfan26 SBbengalsfan26 is offline
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I am 26 I was born with spina bifida. But if I had just been diagnosed I think I would get a lot of info to read from the dr. Google is good although going to the internet isn't always the best bc it can make it really scary and there is a lot of misinformation. Another suggestion is going to the library there should be a fair amount of books on the subject.
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Old 01-30-2014, 05:01 PM
novasparker novasparker is offline
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Wow...I am just having a hard time with the number of people who are posting on this site that weren't diagnosed with Spina Bifida until so much later in life. It really just amazes me that you can go along for your entire life and nobody realize what is going on. I guess it's a good thing that you case seems to be so mild since you were able to function so well for 34 years that you didn't have a diagnosis until now. Good luck to you.
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Old 06-30-2014, 08:35 AM
elmarianexx elmarianexx is offline
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Quote:
Originally Posted by Jaci View Post
I am a 34 year old female and today I was told that I have Spina Bifia.* I have heard of this but virtually know nothing about it.* Is there any websites or resources that many of you have referred to in order to help you understand how this happens? <br/><br/>
Hi Jaci! Didn't the doctor explain it to you? You can read about Spina Bifia on wikipedia by copying and pasting this link to your Internet browser : http://en.wikipedia.org/wiki/Spina_bifida

Best luck!
Elizabeth
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Old 07-07-2014, 08:40 PM
elmarianexx elmarianexx is offline
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Spina bifida - is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube that will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

Spina bifida malformations fall into three categories: spina bifida occulta, spina bifida cystica with meningocele, and spina bifida cystica with myelomeningocele. The most common location of the malformations is the lumbar and sacral areas. Myelomeningocele is the most significant and common form, and this leads to disability in most affected individuals. The terms spina bifida and myelomeningocele are usually used interchangeably.

Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Intrauterine surgery for spina bifida has also been performed, and the safety and efficacy of this procedure are currently being investigated. A study conducted with mothers who had prior spina bifida births indicates the incidence of spina bifida can be decreased by up to 70% when the mother takes daily folic acid supplements prior to conception.

You can find more information about spina bafida on wikipedia.
Wish you luck!
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