October is Spina Bifida Awareness Month!

Did you know—October is known as Spina Bifida Awareness Month, with October 25 being designated as World Spina Bifida and Hydrocephalus Day? That means, all October long, you can help raise awareness around spina bifida, and amplify the voices of those affected. 

Whether you’re looking to develop your own understanding of spina bifida, discuss it with family, or raise awareness on a wider scale like social media, here are a few ways that you can get involved – courtesy of the Spina Bifida Association!

What is Spina Bifida?

During embryonic development, our neural tube normally closes fully within the first month. This neural tube is a layer of cells which later develops into the brain or spinal cord. However, in patients with spina bifida (or “cleft spine”), this neural tube does not actually close all the way.

Doctors are still not sure exactly what causes this, though a blend of genetic and environmental factors is thought to play a role. Additionally, a mother’s diet with insufficient folic acid intake may also play a role. Regardless, the vertebrae fail to completely enclose the developing spinal cord nerves, leaving some of the nerves exposed. Even after surgical repair, many patients experience permanent nerve damage and some lower-limb paralysis.

There are also multiple forms of spina bifida. Most patients have spina bifida occulta, in which the nerves develop correctly despite vertebrae malformation. When this form causes health effects, these are usually back pain or impaired bladder function. Next, closed neural tube defects occur when fat, bone, or meninges (protective spinal cord covering) malformations impact spinal cord development. Partial paralysis and bowel dysfunction are symptoms, though many patients are asymptomatic.

Then, patients with a meningocele have a normally developing spinal cord, though the meninges and spinal fluid poke out of a spinal opening. Complete paralysis and bowel dysfunction are symptoms. Finally, myelomeningocele is the most severe form of spina bifida in which the spinal cord and meninges protrude from a spinal opening. Symptoms include partial or complete paralysis, difficulty walking, and bowel dysfunction.

Additional Symptoms and Treatment Options

Additional symptoms associated with Spina Bifida include:

  • Intellectual disabilities
  • A dimple or tuft of hair over the affected area
  • Hydrocephalus
  • Seizures

Currently, there is no cure for patients with spina bifida. However, there are some treatment options available, such as medication, surgery to prevent infection or assist patients if the fluid-filled sac breaks, corrective shoes or crutches, and bowel management regimens.

How YOU Can Help Raise Awareness

So now that you know a little bit about spina bifida, here are a few ideas on how you can get involved in Spina Bifida Awareness Month!

Support the Experts

One way you can contribute is to donate to organizations such as the Spina Bifida Association! Your donations can help directly support the 166,000 patients in the United States, as well as drive critical research within this field. This year, the Spina Bifida Association is offering a silicone, latex-free bracelet to those – within the United States – who donate by October 31, 2021.

Subscribe to the amazing Spina Bifida Association Newsletter

If you head to the SBA website and scroll to the bottom of the page, you’ll see a button that reads: “Sign up for SBA News.” This comprehensive newsletter offers educational and supportive resources; shares updates on research or potential trials; shares patient advocacy opportunities; and provides insight into related activities or events on both a local and national scale. If you’re looking for a way to get more involved in your community, this newsletter can certainly point you in the right direction.

Leverage Social Media

Within the country, and the world, millions of social media posts are shared each day. So why not galvanize your social media for a good cause? In addition to following SBA on social media, you can also share stories or hear from those directly affected. Use hashtags like #SBAM2021 and #SpinaBifidaAwarenessMonth to be a part of the conversation! There are also some graphics you can use here. Feel free to share your own story, connect with others, or even just share some facts! If you’d like to share your own story or be featured on SBA, you can contact the organization here.

Host an Awareness Day

There are plenty of opportunities to hold an awareness day at your school or within your work! You can ask your school administrators if you can hold an event, even if it’s just wearing teal to raise awareness. If you’re not able to hold an awareness day at school or work, consider contacting your local media (newspapers, news stations, radio, etc.) to see if they would be willing to share a story and help raise awareness. Learn more about raising awareness, or finding ways to become an advocate, here.

Build a Community

If you or someone you know has been affected by spina bifida, you’re not alone. Having support from others can be crucial. In addition to sharing your story on social media, you may also consider joining an SBA chapter. Altogether, there are 26 separate SBA chapters nationwide. You can find them here.

Walk-N-Roll

You may have missed the virtual Walk-N-Roll for Spina Bifida, which took place on October 2, 2021. Altogether, the fundraiser raised $188,507 for research, advocacy, and education. If you’d still like to get involved, consider planning your own Walk-N-Roll event (you can find some ideas here) within your local community.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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