With a primary immunodeficiency (PID) you are extra susceptible for infections, auto-immune problems, inflammatory reactions, extreme allergies or cancer. It is the result of a congenital, genetic defect in one or more components of the immune system. The disorder is more common than you would think, is present in nearly 500 different forms which are in turn very rare.
If you suffer from a chronic disease, you need life-long treatment with antibiotics, immunoglobines or immunomodulators. A stem cell transplant or gene therapy may be required to survive. Patients are often anxious and insecure about their treatment or future and are faced with physical fatigue. They also often meet with lack of understanding, because PIDs are relatively unknown and are often invisible on the outside.
CARE4KIDS
From a very early age, a primary immunodeficiency has a large impact on the patient's life. Which is why UZ Leuven not only commits to diagnosis and treatment but also to psychosocial support of children and youngsters with a PID. Thanks to the KID-fund, psychologist Janne Houben has been part of the paediatric immunodeficiency team for the past four years. There she started the CARE4KIDS project, which has the objective to give children with a PID a development that is as normal as possible and to provide a good quality of life.
We focus on tailor-made information. To this end we developed the educational booklet 'Kijk, mijn afweer' about the immune system especially for children.psychologist Janne Houben
Psychologist Janne Houben: “The psychosocial support of children and youngsters, as well as their families is very important for us. This starts with education: focus on tailor-made information. In cooperation with Noozi, we developed the booklet 'Kijk, mijn afweer' especially for children, which very simply explains what the immune system is, how it functions and what happens if you have a immune disorder or PID. A good understanding is very important for the patient, but also for his surroundings. It also has a positive effect on the correct follow-up of the treatment."
Acceptance process
The social network of the children and the youngsters is also closely involved. “We strongly focus on the collaboration with the schools, especially for children that have to miss a lot of school days because of their disorder. During school visits we inform both teachers and students about what a PID is. We also look at how the school can support the child as good as possible, for instance with the help of Bednet or home education.”
Psychologist Janne Houben: “The psychosocial support of children and youngsters, as well as their families is very important for us. This starts with education: focus on tailor-made information. In cooperation with Noozi, we developed the booklet 'Kijk, mijn afweer' especially for children, which very simply explains what the immune system is, how it functions and what happens if you have a immune disorder or PID. A good understanding is very important for the patient, but also for his surroundings. It also has a positive effect on the correct follow-up of the treatment."
Acceptance process
The social network of the children and the youngsters is also closely involved. “We strongly focus on the collaboration with the schools, especially for children that have to miss a lot of school days because of their disorder. During school visits we inform both teachers and students about what a PID is. We also look at how the school can support the child as good as possible, for instance with the help of Bednet or home education.”
Certified expertise centre
On 22 April the World PI Week takes a start. This is a world-wide campaign to bring PIDs to the attention. The campaign promotes early diagnosis and access to good care for every patient. Even with advanced genetic techniques it is still very difficult to come to the diagnosis of PID. Follow-up in an expertise centre is often what makes the difference. Ten years ago, the UZ Leuven paediatric immunodeficiency department, under the supervision of prof. dr. Isabelle Meyts, was the first Belgian centre to be acknowledged by Jeffrey Model Foundation als Diagnostic and Research Reference Networkcenter for PID. It is also the first certified ERN-RITA Core Center in our country. In addition professor Meyts is chairman of the European association for primary immunodeficiencies (PID).
