October is Spina Bifida Awareness Month!

 

Did you know that October is Spina Bifida Awareness Month? This month is designed to celebrate those living with spina bifida, spread awareness and education among the general public, and raise critical funds designed to spur necessary research. 

Today, we’re going to dive into what spina bifida is, and the varied steps that YOU can take this month to get involved!

Spina Bifida: An Overview

Spina bifida, which literally means “cleft spine,” is a birth defect that occurs when the spine and spinal cord don’t develop properly. This is caused by the neural tube failing to close during the first month of embryonic development, leaving a portion of the spinal cord exposed, which may cause nerve damage.

There are several forms of spina bifida. Spina bifida occulta is the most common and often mildest form; while the spinal cord nerves develop normally, the vertebrae are malformed. This form typically does not cause health problems beyond back pain or impaired bladder function. Closed neural tube defects occur when spinal cord development is affected by meninges, bone, or fat malformations. For those with a meningocele, the meninges and spinal fluid protrude from an opening in the spine and are covered by a sac. Finally, myelomeningocele is considered the most severe form of spina bifida, in which the spinal cord and meninges protrude from an opening in the spine.

An estimated 1 in every 2,500 babies is born with spina bifida. Typically, it is present at birth. Although the spinal opening can be surgically repaired, many individuals have permanent nerve damage and varying degrees of lower limb paralysis. Researchers believe that a mix of environmental and hereditary factors lead to spina bifida. Insufficient folic acid during pregnancy has also been linked to this condition. Symptoms vary based on spinal defect, but can include:

  • Fluid-filled sac on the back protruding from the spinal column
    • Covered by skin (meningocele)
    • No skin covering (myelomeningocele)
  • Lower limb paralysis
  • Difficulty walking
  • Intellectual disabilities
  • Seizures
  • Bladder control difficulties
  • Dimple or tuft of hair above affected area
  • Difficulty walking
  • Hydrocephalus

Ideas for Raising Awareness

So how can you get involved in raising spina bifida awareness (and why is it important)? Well, raising awareness is important because it allows others to learn about this condition and those who live with it. It also amplifies stories of people within this community, allowing them to share a part of their lives and experiences.

Here are some ideas on how to get involved from the Spina Bifida Association

  • Fundraise. Create a fundraiser (Facebook is an easy way to do this!) to help support the Spina Bifida Association, its resources, and its research. 
  • Share your story. If you’d like to share your story about your experience with Spina Bifida, you may do so through the Association’s story page or submit an article to Patient Worthy. 
  • Head to social media. There are numerous ways to raise awareness on social media. You can use the hashtag #SBAM2022 or #SpinaBifidaAwarenessMonth; retweet, like, or comment on stories shared by those within the community; and or share important facts using these graphics
  • Learn more. Want to stay involved even past this month? Consider learning about Teal on the Hill to advocate for continued funding, disability rights, and more.
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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