We Are Pioneers

According to PCI Health, there are 10 different awareness campaigns for the month of October, most of which are widely known. (http://www.pcihealth.edu/education/Health_Awareness_Calendar.htm)

Fifth on their list is Spina Bifida. How many of you know about this neural tube defect?

There are four types of spina bifida:   occulta, closed neural tube defects, meningocele, and myelomeningocele.

Occulta is the mildest and most common form in which one or more vertebrae are malformed.  The name “occulta,” which means “hidden,” indicates that the malformation, or opening in the spine, is covered by a layer of skin.  This form of spina bifida, present in 10 to 20 percent of the general population, rarely causes disability or symptoms.

Closed neural tube defects make up the second type of spina bifida.  This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone, or membranes.  In some individuals there are few or no symptoms; in others the malformation causes partial paralysis with urinary and bowel dysfunction.

In the third type, meningocele, spinal fluid and the meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin.   Some individuals with meningocele may have few or no symptoms while others may experience symptoms similar to closed neural tube defects.

Myelomeningocele, the fourth form, is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete motor paralysis and sensory deficits within the parts of the body below the spinal opening.    The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction.

Each year, about 1,500 babies are born with Spina Bifida in the U.S. Further statistics show Hispanic women have the highest rate of having a child affected by spina bifida compared with Non-Hispanic White and Non-Hispanic Black women:

  • Hispanic: 4.17 per 10,000
  • Non-Hispanic Black or African-American:  2.64 per10,000
  • Non-Hispanic White: 3.22 per 10,000

(http://www.cdc.gov/ncbddd/spinabifida/data.html)

Folic Acid

Folic acid, also called folate, is an important vitamin in the development of a healthy fetus. Although taking this vitamin cannot guarantee having a healthy baby, it can help.  Recent studies have shown that by adding folic acid to their diets, women of childbearing age significantly reduce their risk of having a child with a neural tube defect, such as spina bifida.  More information on Folic Acid:

(http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm)

Spina Bifida is also known as a “snowflake” condition, as no two cases are alike. The above explanations speak in general terms only. There is much more research that needs to be done. The CDC (Center for Disease Control) has put together a National Spina Bifida Registry. Their objectives are to:

  • Collect continual comparative data on patient demographics, treatment, and outcomes for children, adolescents, and adults 21 years of age or older, who attend spina bifida clinics in the United States.
  • Develop and revise (as necessary) standards of care and treatment best practices for patients with spina bifida.
  • Share evidence-based information between physicians across the country, advancing best practices for the secondary conditions of spina bifida, such as paralysis, neurogenic bladder and bowel, and hydrocephalus.
  • Implement benchmarks to improve care in spina bifida clinics.
  • Identify centers that provide the most beneficial care to patients.
  • Evaluate the clinical cost-effectiveness of spina bifida treatment.

(http://www.cdc.gov/ncbddd/spinabifida/NSBPRregistry.html)

My biggest concern about the registry’s data, is that the CDC does not represent a realistic number of adult participants because frankly, there are only a handful of clinics throughout the U.S. which cater specifically to adults (per the CDC, 17 clinics are participating in the data collection initiative) . As a result I fear they will not be fully able to develop and/or revise standards of care and treatment.

I e-mailed them about it. They have said they are actively working on this challenge by hopefully gaining access to good public health data from Medicare/Medicaid and hospital records. However, they will be using the information to study people with SB and end stage renal disease.

In the meantime…

Our current system does not promote ongoing, coordinated health care for adults living with chronic conditions, which creates significant health management challenges for adults with spina bifida. Most physicians who treat adults were not trained in what were once considered pediatric disorders. According to Timothy Brei, MD, “We’ve grown beyond the boundaries of established medical research. We are the pioneers. Many adults with spina bifida know more about their bodies than the physicians they see.”

Mark Merkens, MD, suggests that adults who lack access to an adult spina bifida clinic might want to look for a rehabilitation physician for primary or specialty care.

(http://www.spinabifidasupport.com/adultsbhealthcare.htm)

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8 thoughts on “We Are Pioneers

    • Medical interventions, like the shunt to drain fluid from the brain (hydrocephalus – that many people with SB have) have allowed more of us to live into adulthood then ever before. Evidently, the medical community lacked the foresight to ensure proper follow-up. Another “obstacle”, in my opinion, is the lack of a famous figure to help champion the cause. Spina Bifida is just as worthy of international recognition as other disabilities/medical/health issues. But we’re just not getting it.

  1. Something else just occurred to me. If the CDC is wanting to conduct a study on people with SB and end stage renal disease, I am wondering if they have information to know that this disease is rampant enough to warrant a study or if it’s something they’re “looking into”. Time for me to shoot off another e-mail.

    FYI: If anyone wishes to contact the CDC about the National Spina Bifida Regisry, you may e-mail Jennifer Bain at vme8@cdc.gov.

  2. In response to, “If I understand this, previously children weren’t making it to adulthood? Now there are no medical providers with proper understanding of adult needs, thus the title.” That is correct.

    The shunt wasn’t invented until almost 50 years ago (http://www.ncbi.nlm.nih.gov/pubmed/11151733). In about 90% of the people with myelomeningocele, hydrocephalus will also occur because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid, causing an excess of the fluid to accumulate. Myelomeningocele also happens to be the most common type of SB.

    • It was the luck of the draw, I suppose, that I didn’t have hydrocephalus as an infant/child, because of my age and I wasn’t even born in the U.S. – and depending on what state I still may not have received appropriate care.

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