October is Spina Bifida Awareness Month. There are many ways you can spread awareness in your community during this time. Recently, representatives from the Spina Bifida Association (SBA) of Georgia-Tennessee talked to first-year medical students at Emory University School of Medicine in Atlanta, Georgia about what it’s like to live with Spina Bifida and why it’s vital that more people enter the field of caring for people with this condition, specifically adults.
Dr. Godfrey Oakley, a physician, and professor at Emory University’s Rollins School of Public Health coordinated and facilitated the event. Other speakers included Ramu Kaladi, a working professional adult with Spina Bifida, who has been involved with the local SBA chapter for many years; Derek Inglesia, a 19-year-old with Spina Bifida; Orfilia Inglesia, Derek’s mom; and Libby Riordan, Chapter Manager for the SBA of Georgia-Tennessee. This was not the first time that Dr. Oakley and Emory have hosted discussions on Spina Bifida, but it was the first time adults with the condition were invited to present. In the past, Dr. Oakley brought in parents whose young children had Spina Bifida.
Speakers covered a variety of topics. Dr. Oakley discussed the use of folic acid to reduce the risk of Spina Bifida, while Ramu spoke on the lack of care for adults and how important it is for doctors to follow the Guidelines for the Care of People with Spina Bifida. He also discussed his experience working as a camp counselor for children with Spina Bifida. Orfilia discussed care from a parent’s perspective, while Derek spoke about taking responsibility for managing his own care as a young adult. Libby let the students know that SBA of Georgia-Tennessee is a good local resource.
“The students were definitely engaged. They asked good questions and were interested in learning about Spina Bifida,” said Ramu. Orfilia was asked how she felt as a parent receiving the news that her son had Spina Bifida, and Ramu and Derek were asked about their experiences growing up with a disability.
Ramu urges others with Spina Bifida to use their network to receive invitations to speak at events like the one at Emory. He urges health professional schools to organize events to promote The Guidelines, emphasize the need for adequate care for people with Spina Bifida, and encourage students to enter the field. Ramu hopes that the care of adults with Spina Bifida improves in the future and that more doctors take notice of its importance. “You get great care as a child, but as an adult, you have to fend for yourself. By talking to these students, I hope we turned on a light bulb,” he said.
If you are interested in giving a talk at a medical school in your area, contact SBA at [email protected] for information and to request any materials you may need.