Adults living with Spina Bifida in this country are on their own when it comes to coordinating the care they need to lead full and productive lives.
Kirsten Carter and her mother, Yvette, are forced to face this crisis every single day. Kirsten is a 32-year-old adult with Spina Bifida. Paralyzed from the waist down, she’s dealt with numerous medical challenges over the years, including having a rod inserted in her back for scoliosis; a “Mitrofanoff a procedure” to create a catheter port in her abdomen to empty her bladder; and more than 20 other surgeries and procedures before she turned 18.
While Spina Bifida affects everyone differently, Kirsten struggles with cognitive, developmental, and behavioral challenges. She graduated high school on time with her peers but functions below age-level and requires full-time adult care. And like many in her situation, that responsibility falls to her mother. 
Thankfully, while growing up, Kirsten, along with her parents Yvette and Scott, and her older sister, Tarin, lived near a pediatric Spina Bifida Clinic. They would go to the clinic on Spina Bifida Day and be seen by a coordinated care team that included a neurologist, urologist, orthopedist, and others. They saw Kirsten until she turned 22, but after that, insurance would no longer cover her care at the clinic. They had a few recommendations on where to send her after that; primarily, the family had to figure it out themselves.
Not every adult with Spina Bifida is as fortunate as Kirsten to have a parent or caregiver with the education, the time, and the resources to provide for their needs.
Yvette has a Ph.D. in Education and is a career professional who’s been able to successfully advocate for her daughter. Even still, it’s been an enormous challenge. Earlier this year, Kirsten developed a wound on the paralyzed portion of her body. When Yvette called for help, she was told she would have to wait over a month to be seen by a doctor.
In the meantime, Yvette took pictures of the wound, which grew into three wounds, and used supplies she’d accumulated over the years to treat them as best as she could. Luckily, she kept the wounds from further spreading, Kirsten was finally seen, and she survived what could have been a fatal infection.
Now living in Atlanta, Yvette has been piecing together Kirsten’s care for over a decade, having to call specialist after specialist to ask if they know anything about Spina Bifida, only to be turned away or receive inadequate care. She is a working professional, mother, care coordinator, and often primary and emergency care provider all in one.
The “adult care cliff” for people with Spina Bifida is real. Kirsten and Yvette’s story is, sadly, quite typical.
The truth is, there are far too few medical professionals across the country that know what Spina Bifida is, let alone how treat it. Fifty years ago, few people born with Spina Bifida survived, but today, of the 166,000 people with Spina Bifida in the U.S., nearly two-thirds are adults. The medical care system simply has not kept up with this rapid change in demographics. The result for adults with Spina Bifida is fragmented, inadequate care, poorer health, and in some cases, premature death.
It doesn’t have to be this way. We have a plan to revolutionize care for adults with Spina Bifida, but we can’t do it without you.
No one should have to cross state lines or drive endless miles to get basic care, and no one should be on their own to coordinate their care.
Fortunately, you can do something about it.
With you we can: 1) secure increased federal funding for Spina Bifida Clinics and 2) build a national multidisciplinary training program—the Adult Care Center—to make sure that there are qualified doctors, nurses, therapists, and other medical professionals with the knowledge, skills, and abilities to treat people with Spina Bifida properly and with the dignity they deserve.
We cannot allow this crisis to continue. It’s immoral. It’s unacceptable. And with your help, it’s fixable.
We don’t have to accept the status quo, nor should we. The 166,000 people in the U.S. with Spina Bifida deserve to have quality care throughout their lives and the chance to achieve their full human potential. With hard work and financial support, we can make that happen. End 2022 by making your contribution now >>
The harsh reality is that because Spina Bifida research and support is so underfunded, we don’t have the resources to fully implement our adult care strategy. We need your support and the support of others like you who are tired of the status quo and want to support a real plan of action that will make a difference in people’s lives.
Are you, or do you know, someone like Kirsten, or her mother Yvette? Are you living this crisis yourself? No one should ever have to be in this position.
Fortunately, you can do something about it. Make a pledge today to support SBA’s efforts to improve adult care for people with Spina Bifida. Together, we really can make a difference. Make a final gift in 2022 here >>