Thursday, October 1, 2009

October is Spina Bifida Awareness Month

I know a LOT of people focus on it being Breast Cancer Awareness Month. Don't get me wrong - that's a great and noble cause, too. But for me, October is about something else.

October is officially National Spina Bifida Awareness Month. So today, I will give you some information on Spina Bifida. Plus, I'll have a classic post from last year, over the weekend. (All of the following facts are from the Spina Bifida Association of America, except as noted.)

What is Spina Bifida? Spina Bifida is a neural tube defect, occurring in the first months of pregnancy, where the spinal column does not completely close up.

Over 185,000 Americans live with Spina Bifida, according to the latest tally from the Centers for Disease Control in Atlanta, Georgia. Nearly 1/2 live with the most serious form of Spina Bifida, called Myelomeningocele.

There are three forms of Spina Bifida.

Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.

There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood.

In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.

The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.

This form of Spina Bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities.

Spina Bifida costs over $532,000 per child. That's a LIFETIME cost. Staggering, isn't it? Here's an even more staggering statistic. In the US, total surgical and other medical costs for ALL of those with Spina Bifida is over 200 MILLION dollars. (These numbers are in mid-1980's US $$ - and so these are likely higher!)

What can be done to prevent Spina Bifida? The best course of action is for ANY woman who may become pregnant to be sure to take a multivitamin that contains Folic Acid, or Vitamin B9. The suggested dose for those women who do not have a history of pregnancies with Neural Tube Defects is 400 micrograms, while for those who have had a child with an NTD is 4,000 micrograms. Even if you're not planning on getting pregnant, this is the best bet just in case you DO become pregnant. Folic acid has been shown to reduce the incidence of Spina Bifida and other NTD's by 70 percent! However - there's no single cause, as in my case, it was due to the use of a herbicide called Agent Orange in Vietnam, which was found in 1997 to cause an increase in Spina Bifida incidents. There is currently a study that is trying to figure out what in a person's DNA causes Spina Bifida - and yours truly is planning to be a part of this study.

Is there a cure? Not currently. The effects can be reduced via pre-natal surgery, which is currently in a phase III clinical trial - but the surgery is not without risk to the mother and the unborn child and as such further study is needed.

So, there are the facts. I tried to keep it as simple as possible. Hopefully, this is easily understood by all of you. If you have any questions, please do not hesitate to contact me at or at and I'll either assist you myself, or find someone who can.

Courage + Belief = LIFE

1 comment:

Pat Jenkins said...

j mo let us hope october does bring more awareness of spina bifida...