Spina bifida is a congenital malformation of the spinal cord, spinal column, and brain. Due to advancements in medical, surgical, and rehabilitative care, the majority of people living with spina bifida today are adults.
The UPMC Adult Spina Bifida Clinic provides coordinated care that often begins by working with pediatric specialists to ensure a smooth transition to adult health care. Our clinic is the only program in western Pennsylvania specializing in the unique medical needs of adults with spina bifida.
Clinic Care Partner
The UPMC Adult Spina Bifida clinic is designated by the Spina Bifida Association as a Clinic Care Partner, meeting all 10 standards identified as best practices to care for individuals with spina bifida.
Health Problems Associated with Spina Bifida
People with spina bifida typically have increased pressure in the brain (hydrocephalus), which is treated by surgical shunting (draining).
Many health issues can accompany spina bifida, such as:
- Paralysis of the lower limbs
- Bowel, bladder, and kidney problems
- Sexual dysfunction
- Skin breakdown
- Unevenness in verbal versus nonverbal or visuospatial abilities when thinking and learning
- Executive dysfunction (e.g., difficulty planning and organizing; difficulty letting something go; difficulty regulating emotions; difficulty with time management)
- Social issues
- Difficulty with math
Adults with spina bifida face additional unique challenges related to health and mobility, including:
Treatment at the Adult Spina Bifida Clinic
As adults with spina bifida age, they may experience issues related to spina bifida, but they may also encounter the typical effects of aging. Our clinic, geared specifically toward adults, combines a variety of specialties in order to provide the most comprehensive, up-to-date care for patients with spina bifida.
The UPMC Adult Spina Bifida Clinic offers on-site:
- Bloodwork and urinalysis to measure kidney function
- MRI and CT scans
- Ultrasounds of kidneys and bladder
Our treatment team includes:
- Physical medicine and rehabilitation physician
- Physician assistant
- Nurse who specializes in spinal cord conditions
- Peer counselor
- Personal trainer
- Social worker
- Clinical/research psychometrician
- Orthotist, as needed
Other specialists at UPMC Mercy include:
Patient Assistance Fund Program
Patient Assistance Funds are available for Pennsylvania residents with Spina Bifida who qualify. To determine your eligibility, you will need to complete and submit an Income Attestation Form (PDF), which we will provide annually and upon request. If you are approved to use the Patient Assistance Funds, we can reimburse you for purchases and expenses related to your health and well-being. After approval, you can submit receipts for reimbursement via mail:
UPMC Mercy Pavilion
1622 Locust Street, 4th Floor PM&R Clinic
Pittsburgh, PA 15219
You can also message Darcie Petrillo, PA-C, via MyUPMC or call 412-232-8902 for more details and any questions.
Our doctors, nurses, and staff understand that mobility is crucial to an independent lifestyle. They work closely with experts at the UPMC Center for Assistive Technology (CAT) to prescribe assistive devices to help you maintain your mobility and independence.
The CAT also makes referrals to vocational, social, and other community services, as needed.
Adult Spina Bifida Clinic Newsletter
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