We tend to think of a disease or a disorder like spina bifida as a medical problem requiring the competent, caring hands of doctors, nurses and the like. So, naturally, we leave the prevention and cure in the safe hands of medical researchers, scientists, government agencies and even businesses. But all these hands — from those affected, to those who care, treat and work towards a cure — belong to people who need a supporting hand from all of us to make the biggest impact.
According to Godfrey P. Oakley, director of The Center for Spina Bifida Research, Prevention and Policy and professor of epidemiology at the Rollins School of Public Health at Emory University, the elimination of preventable spina bifida “F” and anencephaly “F” by 2024 is an achievable goal!
That is only a decade away. So how do we do it?Play a Hand in Awareness and Education
Every year 180,000 babies are born worldwide with known preventable neural tube defects. This is a personal and global tragedy.
Spina bifida is a permanently disabling birth defect caused by a failure in the proper closure of the neural tube and its coverings during early pregnancy. Anencephaly is a fatal defect in which part of the brain never develops.
Like most diseases and disorders, there is not just one face of spina bifida. It comes in multiple forms and from various causes, not all of them are known yet. Three forms with known causes are:
- Spina Bifida “F” and Anencephaly “F” caused by a folate deficiency in pregnant women.
- Spina Bifida “V” caused by the drug Valproate (for epilepsy, neuropathic pain syndromes, migraine, and bipolar disorders) in pregnant women.
- Spina Bifida “DM” caused by insulin dependent diabetes in pregnant women.
Currently only 25% of preventable neural tube defects are actually being prevented worldwide.Play A Hand in Prevention
Folic acid is a synthetic form of folate, a B vitamin found in leafy greens. Folate is needed for cell growth and blood production and, therefore, a particularly important micronutrient for fetal development in pregnant women and young children.
In Boston in the mid- 1930s, the rate for spina bifida and anencephaly was 50 per 10,000 which is the current rate in most of India and much of northern China. In these countries about 90% can be prevented simply by folic acid. The rate in Atlanta in 1968 was about 25 per 10,000.
In 1998, the United States implemented mandatory folic acid fortification of enriched cereal grains (wheat, corn meal, rice) used primarily in breads, cereals and pastas. This fortification along with an increased use of prenatal vitamins has virtually eliminated preventable spina bifida “F” and anencephaly “F” in the United States.
Unfortunately, the rest of the world has yet to catch up. Only 70 countries have implemented folic acid fortification requirements of a food staple.
If you are (or know of) a woman of reproductive age, make sure to consume 400 mg of folic acid per day to prevent spina bifida and other neural tube defects.
If you are (or know of) a woman of reproductive age who is taking Valproate or has insulin dependent diabetes, know the risks of neural tube defects before planning a pregnancy and discuss options with your doctor.
Currently, non- folic acid preventable neural tube defects occur in about 5 per 10,000 birth/pregnancies.Play A Hand in Activism
More research is needed. Spina Bifida still has unknown causes, preventions and cures. Those living with spina bifida today need better treatment to extend their life expectancy, reduce complications from the disorder and increase their quality of life.
Folic acid fortification needs global partners to champion this public health intervention that is affordable, achievable and effective within local communities and to government agencies.Play A Hand in Funding A Cure
On Sunday, May 18th, Godfrey Oakley, a pioneer in the folic acid fortification movement and an international advocate for the prevention of spina bifida “F”, along with co-chairs Brenda Shavin and Janet Edwards will be hosting Godfrey’s Grand Slam Bridge Benefit at Emory University’s Rollins School of Public Health.
Donations can be made at Make A Gift Online, Emory University. Direct the funds to “Rollins School of Public Health” and “Center for Spina Bifida Research, Prevention and Policy.” Or by mail/check to: “Center for Spina Bifida Research, Prevention and Policy.” At:
Office of Gift Records
1762 Clifton Rd., NE, STE 1400
Atlanta, GA 30322-4001
To learn the compelling history of folic acid fortification for the prevention of spina bifida and the role of the Centers for Disease Control and Prevention:
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