Media contact: Adam Pope
The Spina Bifida Association has named October Spina Bifida Awareness Month, and the association aims to raise more awareness and support for those living with spina bifida.
Spina bifida is a congenital disorder in which the brain or spinal cord, and/or their protective coverings, fail to develop properly due to the failure of the fetus’s spine to close during the first month of pregnancy. The resulting nerve damage is permanent, leading to varying degrees of paralysis of the lower limbs.
Generally, more focus is given on care for pediatric patients with spina bifida; but adult care for spina bifida is harder to come by. Advancements in treatment have allowed patients with spina bifida to live longer than in the past, which has left the future unclear for health care beyond pediatrics. It is estimated that there are now many more adults living with spina bifida than children; therefore, the need for adult care is growing.
In 2012, the University of Alabama at Birmingham answered the call to care for spina bifida patients into adulthood and launched a new clinic for adults, which is supported by the Department of Physical Medicine and Rehabilitation as well as the Departments of Neurosurgery and Urology, all part of the Marnix E. Heersink School of Medicine.
The UAB Transitional Spina Bifida Clinic, one of only a handful in the United States, works with providers at Children’s of Alabama to provide seamless care as patients age out of the pediatric space.
“Transitioning from pediatric to adult care is difficult, very difficult; but the transition of going from UAB to Children’s was wonderful,” Taria Jackson said. “They have helped me simply by allowing me to be an adult, to feel like an adult, to come in and speak for myself, tell them about my issues, and get advice or recommendations. The team makes me feel comfortable to ask anything, and they support whatever decision I make.”
Jackson adds that, the older she gets, the more health issues she will encounter.
“[My doctors] are there for me, keeping a careful eye on my symptoms, and helping to make life more comfortable for me,” Jackson said. “The Spina Bifida team is true to their word: If they say they will see you in six months, they will see you in six months. They don’t let me fall through the cracks, and they really do care about me.”
Elizabeth Collier, also living with spina bifida, says there are plenty of misconceptions about the disease.
“Just because those with spina bifida walk or move around differently, that doesn’t mean that we are incapable of living a full, normal life,” Collier said. “My friends and I are able to work, volunteer, water ski and do so many different things.”
Jackson echoed that sentiment, sharing that she plans to apply to medical schools and doctoral programs to achieve her goal of earning a professional degree to advocate for others with physical disabilities.
“I am passionate about understanding the impact of complex disease on a physiological and emotional level,” Jackson said.
Learn more about Jackson and Collier here.