This Sunday October 6 is World Cerebral Palsy Day. Jacky Vagnoni, president of the Cerebral Paralysis France Federation, tells us more about this disability which is the most common motor deficiency in children and affects more than 125,000 people in France.
Cerebral palsy is the leading cause of motor disability in children, and yet it remains relatively little known. What is this ?
Jacky Vagnoni : Cerebral palsy is the consequence of irreversible damage to a developing brain. These appear before birth, during childbirth or just after. This is a very marked period in time. These lesions cause movement and posture disorders. There is a motor disability affecting all four limbs, only the lower limbs or hemiplegia. It is accompanied by associated disorders such as cognitive problems, learning or communication disorders. The people affected are also likely to have difficulty finding their way in space, visual problems or even behavioral problems.
It’s a very complex disability. We are used to saying that we are each unique people. But here, the picture of cerebral palsy is extremely unique. I keep in mind a doctor’s explanation. He said: “there is no average profile of a person living with cerebral palsy. Each time, it is extremely diverse, because the associated disorders can be more disabling than the motor disorder itself.”
There are 125,000 people living with cerebral palsy in France. The majority of them are adults. They have a life expectancy almost similar to that of the general population.
“Today, cerebral palsy affects one in 550 births”
What causes cerebral palsy?
In 50% of cases, brain damage causing cerebral palsy is linked to extreme prematurity. Otherwise, it can be the result of an accident of birth such as the umbilical cord around the neck or even an infection, a stroke, trauma to a brain in formation… The causes of cerebral palsy are identified in 60% of cases. Thus, there remains a certain number of full-term children with cerebral palsy for whom we cannot determine its origin.
On the other hand, advances in medicine mean that the prevalence of a newborn born with cerebral palsy tends to decrease. When my son was born in 1988, it was commonly said that this disorder affected one in 500 births. Today, cerebral palsy affects one in 550 births.
Some families – like Camille, mother of a little boy affected by this disability who told his story to Quelle Docteur – take many months to obtain a diagnosis of cerebral palsy. How to explain this?
Late diagnoses of cerebral palsy are multifactorial. The first factor that comes to mind is a problem with the training of health professionals. Broadly speaking, health care personnel and doctors are not sufficiently trained in disability. A doctor-researcher whom the association met confided that over a 7-year course, if there was one hour devoted to disability, it was the maximum. Some practitioners are truly helpless and without reference when it comes to cerebral palsy. Whether health professionals or educators, they often learn through contact with people in consultation.
Furthermore, I wonder if there is not, at this very particular period of birth, a lack of exchange and communication between the medical and health worlds. Do they work together? Do they know each other? It’s not safe.
There is also a lack of resources. For example, Aaron’s family had an MRI after a year of waiting. These delays in diagnosis are a real problem. For an infant born with cerebral palsy, rehabilitation must be implemented immediately. Indeed, the period of 0-3 years is really crucial to be able to stimulate this brain which still has a lot of cerebral plasticity at this age. A race against time begins from the diagnosis. The earlier it is, the fewer the consequences of the disability will be. Putting the resources there is of course a huge contribution for the child, but also for their family, because they are on the front line.
“Cerebral palsy is a complex disability”
What are the difficulties associated with cerebral palsy?
From the moment motor function is affected, we need help. It can be 24/7 or punctual… but the person needs help. He needs professionals who know his disability and who can guide him well. Which is not always easy to find.
Furthermore, the difficulties are not limited to mobility. The city of Annecy, where I live, wanted to improve its accessibility by making all buses and stopping platforms accessible to people with reduced mobility. We had a hard time making them understand that “it’s very good to meet standards, but it won’t solve all the problems”. We will always need adapted transport for people whose cognition is also affected. Indeed , the person who is going to take the bus, if they have difficulties with spatial orientation, they will not be able to get to their appointments or to their work alone.
The integration and inclusion of people who have dyspraxia, language disorders or cognitive problems can also be complicated. There is the whole social aspect, in fact. On Monday morning when you find yourself in front of the coffee machine, everyone is talking about their weekend, their vacations, their outings. Even just going to the cinema requires days of preparation for people forced to travel due to a disability: you need a suitable theater and transport. That makes things not so simple in terms of relationship.
Cerebral palsy is a complex disability. But, it is a model application for inclusion. If we arrive to do moving things forward for cerebral palsy, we will also help a large number of others people who have cognitive, mobility or orientation difficulties. HAS every time we win, we also win for other pathologies and society in general.
Disability: “three generations ago, children stayed at home almost hidden”
What is the aim of World Cerebral Palsy Day?
World Cerebral Palsy Day is an initiative of the International Cerebral Palsy Society (ICPS). It brings together 42 countries. The aim is to raise awareness about cerebral palsy which affects 17 million people worldwide. Even if Aurélie Aubert and her gold medal in boccia at the Paris 2024 Paralympic Games recently put the spotlight on cerebral palsy, it remains relatively little known.
The association is also taking advantage of this day to once again plead for the establishment of centers of expertise around cerebral palsy throughout the country. They would make it possible to better guide families as well as adult patients.
However, while there is still progress to be made, there have been significant advances in recent decades. We must remember that only three generations ago, children stayed at home, almost hidden, or were placed in psychiatric hospitals. They didn’t go to school. Today, we see more and more students with disabilities in class. It remains – of course – complicated, but the place of disabled people in society is becoming more and more visible.
This October 6 is also Carers’ Day. As you said, families are on the front lines of cerebral palsy. Is this common date a coincidence or intentional?
It’s a coincidence. But I say “why not”. Indeed, the family is on the front line when it comes to disability issues… both when it concerns a child or an adult. The problems of caregivers are known to us. Being a caregiver in France is very often the mother who sacrifices her professional career or at least puts it on the back burner. But we must not forget our siblings either. The family in general is involved in the care process.
A carers day is good. But what’s going on behind? Currently, the measures taken in recent years are mainly focused on caregivers helping loved ones at the end of life and are limited. With disability, there is no end. The devices are not always well suited to our cases. Some caregivers need help all year round, and even throughout their lives.
If I had to give one piece of advice to parents of a child who has just been diagnosed with cerebral palsy, it would be to not not be alone with the disability. We need to open up, reach out, meet other families. We feel like we’re alone in the world… but in reality we share it with many other people.
