Cerebral palsy (CP) is often described as a childhood condition, but the truth is that there is no cure. Most children who develop cerebral palsy will become adults with cerebral palsy. There are now more adults living with CP than children in the U.S. Experts are now working on changing the definition of cerebral palsy to be more inclusive of affected adults.
Cerebral Palsy as Childhood Disability
The Centers for Disease Control and Prevention currently describes CP as “most common motor disability in childhood.” Cerebral palsy is so often associated with childhood because this is when it begins. CP is caused by damage or malformation in the brain during the very early stages of life.
It most often develops in the womb or during labor and delivery. In some cases, it may result from damage to the brain after birth. But, the onset of CP only occurs while the brain is still developing.
Childhood is also an important time for cerebral palsy because of treatment. There is no cure for cerebral palsy, but treatments help manage and minimize symptoms. The earlier these interventions begin, the better the outcome for the child.
Adults with Cerebral Palsy
Because there is no cure, children with cerebral palsy who grow into adulthood will become adults with the condition. The focus on CP in childhood means that these adults are too often forgotten. Both research and treatment are skewed toward children and rarely focus on adults.
Experts say that transitioning from pediatric care to adult care for an individual with CP is like falling off a cliff. Classified as a pediatric condition, CP treatment and therapy for adults is limited. It can be difficult to find physicians or specialists with adequate knowledge of adult CP.
As a result, many adults with cerebral palsy struggle to find good care. They often don’t feel like doctors listen to or understand their issues and concerns. Many also often find that insurance plans no longer cover essential therapies, like physical therapy, once they become adults.
Cerebral palsy is not progressive. It doesn’t get worse with age, but aging with CP can put individuals at increased risk for many secondary conditions: osteoporosis, arthritis, diabetes, and mental health issues, for example. Adults with CP need specialized care but rarely get it.
Changing the Definition of Cerebral Palsy
Some experts believe that redefining cerebral palsy to include adults could shift the landscape in positive ways. Several organizations have already made the change, including the Cerebral Palsy Foundation, the Cerebral Palsy Alliance Research Foundation, and the Cerebral Palsy Research Network.
These groups and others have redefined cerebral palsy as “the most common lifelong physical disability.” By acknowledging that the condition persists into adulthood, they hope to bring more attention to the needs of adult CP patients.
A major push to making this definitional change is to drive research into cerebral palsy in adults. Experts hope the new definition will open more research doors, including studies specifically about adult CP but also studies of other conditions that include adults with CP.
Changing the definition of cerebral palsy won’t result in instant benefits for adults. Over time, it should shift research, improve funding, and lead to better treatments and support for adults living with this condition.
