Tips to Protect Your Skin

Tips to Protect Your Skin

Skin breakdown is a frequent issue for individuals with Spina Bifida. This can be due to sensory loss, immobility, wheelchair use, excessive moisture due to incontinence or perspiration, bony deformity, obesity, and/or executive function challenges. In the 2015 paper “Pressure Ulcers in Spina Bifida,” National Spina Bifida Patient Registry (NSBPR) data was used to explore …

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Is Your Catheter Made with DEHP? Find Out!

Is Your Catheter Made with DEHP? Find Out!

Is your intermittent catheter made with a chemical called DEHP? It’s time to find out! On March 1, 1987, after a popular voter initiative was approved, the state of California created a comprehensive list of “Chemicals Known to Cause Cancer or Reproductive Toxicity.” Because of this legislative action, Proposition 65 labeling came into effect. You’ll …

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Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

By Marsha Miller No one ever said: “You have given birth to a beautiful baby boy.”   I never received a hospital birth picture.   Instead, I was placed in a private room, a time when birthing mothers shared a room, while doctors and nurses spoke in whispers and tiptoed about.   I asked if my baby was ok, and the …

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A Journey into Tomorrow

A Journey into Tomorrow

By Jonathan Castillo, MD, MPH Texas Children’s Hospital Reflecting on the large amounts of great discussions that took place in March at the Third World Congress on Spina Bifida Research & Care regarding aspects of SB care, the adolescents’ journey into autonomy and adult-centered care echoes in my mind. Thanks to strong partnerships between families …

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TENS – Drug-free pain management option for people with Spina Bifida

TENS – Drug-free pain management option for people with Spina Bifida

Pain really gets in the way. It can cause one to stop moving quite so much, to avoid going out and participating in normal activities of daily living; it can trigger emotional reactions and contribute to feelings of depression and hopelessness; and it can make one angry and irritable. In other words, pain can significantly …

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Catheter Guides for Children: Teaching Your Child to Self-Cath with Free Educational Resources + Backpacks

Catheter Guides for Children: Teaching Your Child to Self-Cath with Free Educational Resources + Backpacks

At a certain age, kids will be the first to tell you that they want more freedom, and more independence, especially as they head off to school. For many children who have Spina Bifida, part of that sense of independence includes being able to take care of their health regimen themselves. When using a catheter, …

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An Important SBA Announcement

An Important SBA Announcement

By now, I hope that you have read about the work that the Spina Bifida Association (SBA) has been engaged in recently. We shared about the success of the Third World Congress on Spina Bifida Research and Care, the work of the National Resource Center to help people find answers to the puzzling questions they …

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SBA Advocacy in Action

SBA Advocacy in Action

Whether on our own or with partner organizations, SBA has visited more than 50 offices on Capitol Hill this year, working to make sure that the needs of people living with Spina Bifida are known to our country’s lawmakers. Here is what we have been working on: The Fight for Health Care for People with …

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