Father of a daughter with spina bifida, aged 47 and in a wheelchair, François Haffner has devoted his life to fighting to improve the daily lives of people with this disease, and owes this commitment to having been appointed to the rank of Knight of the Legion of Honor on October 28. President of the National Spina Bifida and Associated Disabilities Association (ASBH) for many years, he measures the progress accomplished and that which remains to be covered…

“The association was created in 1993 by parents of affected children and by adults living with this malformation, which affects the spinal cord and the spine,” he recalls. This rare disease affects one in 1000 pregnancies and 120 to 150 births per year. It is linked to an anomaly of closure of an embryonic structure, the neural tube – an anomaly which occurs between the 21st and 26th day of pregnancy.

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At birth, the dorsal opening of the vertebrae is associated with spinal cord lesions, resulting in neurological, motor and orthopedic disorders and disabilities of varying severity. In addition to paralysis and sensory deficits, hydrocephalus, the cause of cognitive problems, affects three out of four patients, requiring the installation of a valve in the brain to divert the fluid accumulated in the cerebral ventricles. Up to 99% of patients also suffer from urinary or fecal incontinence, a very serious handicap in daily and social life.

“Currently, parents can choose between medical termination of pregnancy or surgery to close the neural tube at birth,” says François Haffner. Over the past ten years, around forty children in France have even been able to benefit from a fairly revolutionary antenatal surgery, which has recently been carried out by laparoscopy, with very positive results. » In the future, thanks to cutting-edge research carried out in a few countries, including France, stem cell patches could offer an alternative to surgery.

The care and educational inclusion of children has progressed, with many of them reaching at least the baccalaureate level, but the support from adults remains very insufficient. “Some are in a situation of therapeutic abandonment,” laments François Haffner. Their professional career is also very difficult. » In this context, the ASBH plays a major role in disseminating information.

Very present on social networks, it relies on a network of around 70 volunteers trained to provide help and support to affected families. For prevention, it promotes supplementation with folic acid (vitamin B9) before conception and at the start of pregnancy, effective in 75% of cases. Failing this, fortifying food flours by adding a small quantity of folic acid, recommended by the WHO, could prove useful.

Recognized as a specialist in continence disorders, and for its expertise in life and care pathways, the association also participates in major national disability bodies and collaborates with care networks at national and European level. “This should improve with the creation of a sector more specifically dedicated to spina bifida, which should be launched in January 2024,” says François Haffner.

Created in 1993. Approved as a national association of users of the health system. 2,700 registered on the forum (1,200 visits per day) and 70,000 visits per year to the website. President François Haffner. National help and listening service:; Spina-bifida.org