Familial Spastic Paraperesis is an hereditary genetic disorder which causes spastic paralyis (stiffness) in the legs, progressive muscular weakness, loss of muscle mass in the hands and feet, paraplegia, muscle spasms in the legs and difficulty with speaking.
It is a disease for which there is no treatment, either to reverse the disease or slow it down, nor any way of preventing it, however, it is a disease which can be lived with. Meaning that, generally speaking, it is not life-limiting.
Children who suffer from this disease may start to showsigns of spasticity (stiffness) in their legs, and have trouble walking. In more advanced cases they may need a wheelchair to be able to get around.
In addition to the symptoms already commented on of progressive weakness and stiffness of the legs, symptoms such as loss of muscle mass in the hands and feets, muscle contractures in the legs and difficulty speaking, breathing and even swallowing, as well as eyesight and hearing problems can also present themselves.
As is the case with other rare diseases, Familial Spastic Paraperesis is a very difficult disease to diagnose due to the wide variety of symptoms which can sometimes be confused with the symptoms of other illnesses.
Due to the impact of this disease, mainly the paralysis of the lower limbs, we should take certain precautions when planning a trip by car.
Firstly we must ensure the child's safety by using an approved child restraint system suitable for their size and weight. By law, this seat should always be installed on the rear seats.
Moreover, children with Familial Spastic Paraperesis should always travel in child restraint systemswhich have been adapted to their particular requirements, so that they can stay in the right position even when their legs are stiff or they have lost the ability to move them.
A position that is rear-facing is always the safest option for any child, and especially for children with these movement problems and those associated with a loss of muscle mass and spasticity. Maintaining their position for as long as possible is also highly recommended in order to ensure the safety of these children.
For those cases in which the child needs a wheelchair to get around, we should take into account all the specific advice on how children who use wheelchairs should travel by car.