Testimony: when her daughter was born, she discovered that she was living with cerebral palsy

Testimony: when her daughter was born, she discovered that she was living with cerebral palsy

Emmy has always been a clumsy child without knowing the cause of her many falls. It was only after the birth of her daughter that the diagnosis was made: she suffered from cerebral palsy. An accident linked to birth, cerebral palsy can happen to anyone… Every day, 4 newborns are born with cerebral palsy, or 1 newborn every six hours in Europe. Emmy is testifying today to raise awareness of the early diagnosis of the primary cause of motor disability in children.

For as long as I can remember, I have always been a clumsy child. If there were cobblestones, I was sure I was going to collapse. I still had sores on my hands and knees. I had no balance, I bumped into things very often. I think my parents knew something because around the age of 5 or 6 I went to a balneotherapy center because I couldn’t put my heel on the ground. All this time, I adapted because within my family, talking about these things was taboo and still is today.” testifies Emmy, 40 years old today.

“I discovered serious eye problems at 17”

When I was a teenager, I realized that I didn’t like people on my left, especially when my friends spoke to me from that side. I went to my doctor, he diagnosed me with a vision problem. In fact, I am half blind, missing half of my visual field in both eyes (hemianopia). I had never been tested before and I even managed to get my driving license (Emmy was living in Wales at the time). In reality, I don’t really have a problem with my eyes but my brain is not able to interpret the signals coming from the optic nerve. During this consultation, there was no offer of medical follow-up and I remember being in shock at this announcement..”

“French doctors made the diagnosis after my delivery”

After my studies, I arrived in Europe. It was during a medical visit that a doctor told me in surprise, ‘you have hemiparesis’ (paralysis of one or more parts of the body on one side only). He asked me if I wanted to do physiotherapy sessions to improve mobility on the left side. For 5 years I did physiotherapy every week. But it wasn’t until I was 32, after my first birth and the problems that followed, that a doctor asked me if I had ever had an MRI or other tests. I was the one who put a word to all my symptoms: I actually suffered from cerebral palsy. My whole story unfolded like a spool of thread and I remember feeling relieved to finally have a word about my ailments, but also angry, especially with the medical profession who never offered further testing. early. Since then, I have been followed by a neurologist and I go to a rehabilitation center because I suffer from muscle atrophy in my left leg. But the most handicapping thing on a daily basis is my restricted visual field.” testifies Emmy. She also takes advantage of this testimony to alert parents that if a baby always has a preference for one side, this can be a sign suggestive of cerebral palsy because young children are ambidextrous up to the age approximately 4/5 years.

“I did a lot of sport without knowing that it was good for me”

I have always been sporty, I did karate, then running. I even did two half marathons. Today, I suffer from osteoarthritis in my left ankle and I am starting to have significant pain when moving around. For some time I have had a splint which helps me a lot. I wear it with pride. My daughters (8 and 4 years old) call it the ‘happy leg’. I often tell myself that if I had been diagnosed as a child, I wouldn’t have all these problems today. It makes me angry, I cry and then I roll up my sleeves and decide not to give up. Fortunately, without knowing it, I have always played sports and this has undoubtedly allowed me to ward off certain joint problems.

Cerebral palsy: “It’s an obstacle course but we can live fully”

Today, I am testifying to raise awareness about the early diagnosis of cerebral palsy, but above all I would like to reassure parents: we can live normally even if it is sometimes very tiring. Uncertainty at the time of diagnosis should not define children’s futures. They will adapt because they will have no choice anyway and it is better not to forbid them anything on the pretext that it might be complicated. Let them try everything sportingly and intellectually. If we talk a lot about early diagnosis in children it is also because they will become adults and the care must be multidisciplinary in order to best support them on the path that awaits them. Today, I would especially like to meet other patients who are going through the same thing as me because we have the impression that we are alone, but that is not the case.

Instagram d’Emmy @runemmy_c

On the occasion of World Cerebral Palsy Day which takes place on October 6, 2023, the Cerebral Palsy Foundation recalls that it is the leading cause of motor disability in children.

Every day, 4 newborns are born with cerebral palsy, or 1 newborn every six hours in Europe. Accident linked to birth, cerebral palsy can happen to anyone: umbilical cord, infant stroke, infection of the placenta… And the consequences range from a child with a limp to a child in a wheelchair, sometimes with associated disorders (visual, language disorders…) It is a disability that lasts a lifetime.

Since its creation in 2005, the Cerebral Palsy Foundation has invested nearly 7 million euros in 78 research projects targeting the priority needs of children and adults with cerebral palsy, in particular:

  • The ENSEMBLE project – a major European research project dedicated to the screening and early diagnosis of cerebral palsy, to intervene at the time when the brain is most capable of developing replacements. This project will be financed to the tune of 1.5 million euros.
  • The CAP’ study – a 1time world whose objective is to demonstrate that intensive and fun rehabilitation based on the HABIT-ILE method can change the prognosis of very young children aged 1 to 4 years with cerebral palsy.

On the occasion of World Cerebral Palsy Day, Friday October 6, the Cerebral Paralysis Foundation is calling for donations to support research. Visit his website: www.fondationparalysiecerebrale.org