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TOPIC: Spina Bifida Info & Chat

Spina Bifida Info & Chat 10 years 7 months ago #79

If there is anyone out there with Spina Bifida/Hydrocephalus, maybe you would like to share your life experiences with others or find out more about Spina Bifida then I can point you in the right direction, also you can talk to me if you have been discriminated against because of your disability.

So Drop me a line ok.

cya

Donna:)

P.S. I dont bite lol!!!!!!!!!!

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Re:Spina Bifida Info & Chat 10 years 2 weeks ago #619

I think most of us disabled have been discriminated against at one time or another.

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Re:Spina Bifida Info & Chat 9 years 11 months ago #1215

DAEMONICUSMEDICUS wrote:

I think most of us disabled have been discriminated against at one time or another.


I agree with: DAEMONICUSMEDICUS, when he says: \"I think most of us disabled have been discriminated against at one time or another\"

I know I was Discriminated by my Ex-Employers: Marks and Spencer Plc (M&S), sadly the law on: D.D.A. isn't strong enough in my opinion/view :(

Disability Discrimination Act 1995: www.opsi.gov.uk/acts/acts1995/1995050.htm

The Disability Discrimination Act and you: www.dwp.gov.uk/employers/dda

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Re:Spina Bifida Info & Chat 9 years 11 months ago #1216

I've added some more information on: Spina Bifida For Other Ablehere Users/Memebers: en.wikipedia.org/wiki/Spina_Bifida

Spina bifida (Latin: \"split spine\") is a developmental birth defect involving the neural tube: incomplete closure of the embryonic neural tube results in an incompletely formed spinal cord.

In addition, the bones of the spine (vertebrae) overlying the open portion of the spinal cord do not fully form and remain unfused and open.

This allows the abnormal 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 open spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum (front of the brain) 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 (myelomeningocele), and meningocele.

The most common location of the malformations is the lumbar and sacral areas of the spinal cord.

Myelomeningocele is the most significant form and is that which 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 and an individual with this condition will have dysfunction of the spinal cord and associated nerves from the point of the open defect and below.

Intrauterine surgery for spina bifida has also been performed and the safety and efficacy of this procedure is currently being investigated with an NICHD-funded grant.

The incidence of spina bifida can be decreased up to 70% when daily folic acid supplements are taken prior to conception.

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Re:Spina Bifida Info & Chat 9 years 11 months ago #1217

I've added some more information on: Spina Bifida For Other Ablehere Users/Memebers: www.bbc.co.uk/health/conditions/spinabifida2.shtml

What is it?:

Spina bifida means 'split spine'. There are 33 vertebrae in the spine - if one or more of these don't form properly in early pregnancy, the nerves in the spine may be unprotected, leading to damage of the central nervous system.

This damage may cause mobility difficulties, bladder and bowel problems and, in more severe cases, paralysis below the affected part of the spine.

Disruption of the nervous system depends on how high up the spine the problem lies and how well the spinal cord below the defect works.

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Re:Spina Bifida Info & Chat 9 years 11 months ago #1218

I've added some more information on: Spina Bifida For Other Ablehere Users/Memebers: www.nhsdirect.nhs.uk/articles/article.aspx?ArticleID=344

Spina bifidaIntroductionSpina bifida is caused by problems in the development of an embryo in the womb.

It is known as a neural tube defect as it results from the failure of the embryos neural tube to develop properly.

The neural tube forms in the first few weeks of pregnancy and eventually goes on to form the babys brain, spinal chord and their coverings.

Spina bifida is when neural tube does not develop properly and this results in an incorrectly developed spine.

The features of spina bifida vary between individuals, but commonly the small bones that make up the spine (the vertebrae) have not formed fully and may have gaps in them.

In severe cases, one or more vertebrae may be missing, exposing the spinal chord (part of the nervous system that transmits signals from the nerve endings to the brain).

Normally, the neural tube is fully closed between 26 and 28 days after the start of the pregnancy.

Very rarely, the neural tube fails to close or tears after it has closed.


This can affect the foetus in several different ways. In the least serious form, known as spina bifida occulta, the condition is hidden and usually is discovered only on X ray or through scanning.

This type actually affects up to 30% of the population, nearly all of whom never become aware of it.

In the next most serious type, the coverings of the cord (the meninges) pass back through the opening to form a cyst-like swelling called a meningocele.

In the most serious type, the spinal cord itself is exposed. This is called a myelomeningocele or spina bifida aperta.


Myelomeningocele is more common in females than in males.

The condition affects white people more often than black and Asian people, and tends to run in families.

If the first child has myelomeningocele, the risk for the second child rises to 5%. If two children have myelomeningocele, the risk for a third is 15%.

Taking folic acid supplements reduces the risk of spina bifida.

The Department of Health recommends that women should take a daily supplement of 0.4mg of folic acid while they are trying to become pregnant, and for the first twelve weeks of pregnancy.

Folic acid tablets can be obtained from pharmacies, large supermarkets, health food stores and by prescription.
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Re:Spina Bifida Info & Chat 9 years 3 months ago #5494

Hi! my name is Christi and I also have spina bifida and want to meet other people with the same physical challenge,
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Spina Bifida Info & Chat 2 years 11 months ago #55957

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I never faced ne discrimination n where else can I go

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Spina Bifida Info & Chat 2 years 11 months ago #55958

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I'd also like 2 find more chat sites r some online forums if u come across ne r KNOW of any lemme know k

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Re:Spina Bifida Info & Chat 2 years 5 days ago #59698

Hi Christie I have Spina Bifida I am able to walk but it has got worse as ive got older im now 52 and finding things very hard physically... Ive led my life as a "normal person" or so i thought but it cost me 2 marriages...Because it didnt matter how hard i tried to be "normal" hospitals and just being me was far bigger than either marriage. Ive always been independent and i still am...(man or no man) Its only now at my age I can look back and wish there was things like this for me then..i felt so alone like nobody understood and i was trying so hard to fit in with everything normal taht wasnt normal in my life...coping with things that came with spina bifida ..like incontinence etc how do you explain that when your a teenager?? well you learn to hide it make excuses etc Im still making excuses...lol :)
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Spina Bifida Info & Chat 2 years 5 days ago #59702

Hi Daisy, It's amazing how times have changed and when you look back and see how any disability was seen and how people where treated who had disabilities now they would be expelled from schools or adults would get a police warning. And the internet has helped people find places like this site where they can meet people with the same or different disabilities and make new friends or just chat or get advice. The world has moved on and it will be interesting to see what's ahead in the future!! Welcome to the site!!
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