SB-YOU: Becoming a Parent with Spina Bifida

About the Presenters

Linda Long-Bellil, Ph.D., J.D. @Commonwealth Medicine – University of Massachusetts Medical School

Linda Long-Bellil, PhD, JD, is an Assistant Professor in Family Medicine and Community Health at University of Massachusetts Medical School/Commonwealth Medicine. She conducts research and policy analysis on issues related to health care, including reproductive health care of women with disabilities, and long-term services and supports. She also teaches in the Shriver Center’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and educates current and future health professionals about providing quality care to people with disabilities.

Courtney Shepard Streur – MD, MS @University of Michigan

Women with any disability deserve the same access to reproductive health education and care as women without disabilities. As a pediatric urologist, Courtney evaluates the needs and gaps in providing young women with Spina Bifida (SB) the sexual and reproductive health education and care they desire. Research has shown that only about 5% of young women with SB have ever discussed this topic with a provider, despite nearly 50% being sexually active. The use of gynecologic services and contraception is low in young women with disabilities, but a recent study shows that over 25% of pregnancies among women with SB occur by age 22. This finding indicates that these women may be at increased risk of undiagnosed and untreated STDs, unintended pregnancy, and future unrecognized cervical cancer. By equipping providers with the training and tools to provide sexual and reproductive health education and care to young women with SB, these women can finally get the care they both need and desire.




  • Resource

    Health Care for Women

  • Resource

    Men’s Sexual Health

  • Resource

    Sexual Health and Education Guideline