Spina Bifida Awareness Month 2022

Spina Bifida Awareness Month 2022

October is Spina Bifida Awareness Month – a month dedicated to raising awareness and increasing support and resources for adults and children living with Spina Bifida – a common birth defect affecting approximately 1,427 babies in the United States each year.

What is Spina Bifida?

The literal meaning for Spina Bifida is "split spine" and it usually occurs within the first month of pregnancy when the neural tube is forming. Causes of Spina Bifida can include a folate deficiency which can increase the risk of spina bifida and other neural tube defects. It is the most common permanently disabling birth defect that is associated with life in the United States. The severity of the condition varies depending on several factors, including the location on the spine and the size of the opening. It is sometimes referred to as the ‘snowflake condition’, because each case of Spina Bifida is different. Common side effects of Spina Bifida include sexual dysfunction, inability to move the lower legs, orthopaedic malformations, and bowel issues such as incontinence and neurogenic bowel.

Neurogenic Bowel & Spina Bifida

Managing bowel function can be one of the biggest challenges that is often overlooked for people who receive a Spina Bifida diagnosis. Spina Bifida results in the loss of normal motor and sensory control in the gastrointestinal tract and anorectal dysfunction. This is known as neurogenic bowel dysfunction (NBD). Neurogenic bowel can lead to failure to evacuate the bowel, resulting in constipation or impaction.

With NBD, a bowel management program is essential. Mini-enemas, like ENEMEEZ®, are a gentle, effective way to produce a fast bowel movement. Mini-enemas lubricate and soften stool, as well as draw moisture from the surrounding tissues into the stool to stimulate evacuation. ENEMEEZ® can help those with Spina Bifida maintain a high quality of life and reduce the risk of discomfort, illness, or accidents associated with bowel issues.

Ways to Support Spina Bifida Awareness Month

There are many ways to increase awareness for Spina Bifida that not only help others understand the condition, but also learn how they can participate in supporting individuals living with the condition, such as:

  • Stay current on social media: Follow the Spina Bifida Association on social media on their Facebook, Twitter, TikTok, and Instagram accounts for ideas on ways to participate in advocacy, events, and more.  
  • Share your story: if you, a loved one, or a friend are living with Spina Bifida, sharing your story online is a powerful way to increase awareness and understanding. Upload videos, social media posts, pictures, or blog posts and tell the world about the incredible things people with Spina Bifida achieve each and every day.  
  • Advocate: There are many opportunities to help advocate for the Spina Bifida community. Currently, there is an opportunity to advocate for critical legislation related to home and community-based services that would help millions of people with disabilities access quality home health care. There are also events, ways to give, and other ways to participate by supporting the Spina Bifida community not just in October, but all year. You can even wear the Spina Bifida Awareness ribbon to spark conversation with others.
  • Walk-N-Roll: October 1, 2022, is Walk-N-Roll for Spina Bifida day. It’s a great way to gather the community to participate in a healthy activity together and raise awareness. If you aren’t close to a scheduled Walk-N-Roll event, you can host your own.  
  • Social Media: During the month of October, share stories and resources on social media using the #SpinaBifidaAwarenessMonth hashtag.
  • Join a Chapter: there are dozens of Spina Bifida communities and chapters across the United States. Check out this guide to find one near you! 

Hope’s Story

Hope Ratcliff is a member of the Spina Bifida Association's Advocacy Committee, a UDL Specialist at the University of Southern Mississippi, and an adult with Spina Bifida. She shares what she calls "her story" because she isn’t defined by having Spina Bifida. She says:  "I find my place by bringing my uniqueness to the table. My hope is that people will want to hear what I have to say. Want to know who I am. If not, that’s ok too. That is the chance we all take. Awareness, for me, works much the same way. It's not about me trying to convince people that I have Spina Bifida (SB), or that I struggle with SB, or that I thrive with SB. That is all true. That is just my story. It is up to others to decide whether or not they care and what they’re going to do about it."

Read more of Hope’s story here.

Join the Thrive Community!

The Thrive Community Facebook Group is a private space for any person with a disability, as well as caregivers and healthcare providers that touch their lives. Our purpose is to provide a safe, educational space for group members to ask every question, connect with their peers, and empower each other through communication and connection. Our conversations are led by incredible individuals who themselves are living and thriving. For more enlightening resources, information, and discussion, join the Thrive Community powered by ENEMEEZ® today!

Disclaimer: The material contained is for reference purposes only. Quest Products, LLC does not assume responsibility for patient care. Consult a physician prior to use. Copyright 2022 Quest Products, LLC