To live with Aperts syndrome as a child and an adult
Apert's syndrome causes impediments for life:
Apert's syndrome ( acrocephalo syndactyli = high skull plus joined up fingers and toes ) is a summarized name for a number of deformaties in the facial bones, hands and feet. In addition, the syndrome causes limited movement in the shoulders as well as disturbances in balance. Besides this serious acne can occur during childhood which increases the psychic burden, first and foremost, during the sensetive adolescent years.
An uncommon syndrome:
Apert's syndrome is unusual. in sweden about one in 160.000 is born with the syndrome. That means about at least one child every other year. The syndrome is often caused by a temporary change in a hereditary factor and later becomes dominautly hereditary. Mental ability varies from normal to low. Most are however normally talented but are subjected to such great strains that some skills cannot develop at a normal pace.
Many long and painful modes of tretment.
For children born with Apert's syndrome, the surgical and medical treatment is a long and sometimes a very difficult time. The children go through a number of skull operations at Sahlgren Hospital ( Sahlgrenska sjukhuset ) in Gothenburg which has a team of specialists in plastik surgery. The joint work with the odontologic ( dental ) chlinic at the same hospital is very important as extensive adjustment of the teeth is necessary in order to obtain a good result. Added to this, naturally is continnius contact with the lokal child rehabilization centers and clinics.
Hand and foot operations:
There are many hand and foot operations in order to obtain an acceptable ability to grip and for balance. These operations are carried out at the larger hospitals in Sweden. the solutions for both operations and following treatment are individual as the' degree of deformity varies from case to case.
Inferior hearing and speech:
To have Apert's syndrome is to be extremely susceptible to infections of different kinds. The children often develop inflammation of the ears and as a rule, are obliged to have a plastic tube operated into the ear during adolescence. In connection with ear inflammation hearing and speech development is influenced, not only hearing but even the differing formation of the throat has a negative effect when forming certain letters and sounds. Most of the children must be traind by a logopedagogue in order to improve their speech which is often relatively indistinct.
Sauinting and vision disturbances belong to the syndrome. Eye problems are connected with deformaties in the facial skeleton. Eye doctors follow the development of the eye-holes in order to make sure that the eye nerve is develpoing.
difficulty in movement and disturbances in balance make physiotheapy and special training of great importance during the whole of adolescence and even in adult years.
Children with apert's syndrome have to undergo skull operations, hand operations, foot operations and ear operations which means escperiencing anaesthesia about 30 times as early as kindergaten age. So this can be added a number of smaller adjustment operations which are adopted individually.
To have Apert's syndrome and to be different all your life:
Today most of the surgical adjustments take place during childhood. It was different for children who were born 20 or 30 years ago. They have to undergo almost the same operations in adult life. In some cases, reseatch has only just caught up or methods of operation have greatly refined so that some adjustments must be done again. Unfortunately these modes of treament can be not only difficult but can give inferior results to those carried out on children. Most of the operations give the best results when carried out as early as possible.
" To live with the syndrome is to have a differing appearance and a differingbody. One moves in a different way and it is difficult to carry heavy or clusy things. For me personally the most difficult thing was to have been unable to take part in all the activities thet my friends do. I probably experienced it most during my childhood, as a disabled person, one must be prepared to show that one can manage different things. when such situations occur it is anadvantige to be able to dare to explain the disability. That usually results in a better understanding in the surroundings. I who am writing this belong to the group born with Apert's syndrome 30 years ago. I finished having surgial operations 9 years ago. I have experienced many difficult times, with forinstance, anaesthesia. In spite of this, it was worth while, reward for the trouble is invaluable. Thanks to my hands now functioning, i can today look after myself, my home and my work, with all it implies. Skull and jaw operations have given me better mouth hygiene as well as better speech and breathing capability. I have also developed better resistance against infection. What that depends on, I don't know."
It is written by Lena Svensson an adult with Apert's syndrome.
Apert association works as a support group for adults, children and relatives.
We are an assocation that consists of children and adults with Apert's syndrome, relatives and supporters. We meet a couple of times a year. In between the telefone rings red. Experience, happiness and sorrow are shored.
Information and economical support for the assocation:
You who want to know more about Apert's syndrome and the Apert association or who want to support us with practical help or an economic contribution can so by contacting