The Dutch patient group is very diverse. There are people of different gender, severity of the condition, in age. All unique people, each with their own story nut there are also similarities.
In one of the first group meetings it turned out that all patients are shorter than the expected, based on height of the parents. Most Dutch Netherton patients have allergies or are hypersensitive to food and other things. Hay fever and asthma were mentioned. A number of patients reacted adversely to topical hormone treatments, resulting in adrenal insufficiency. In some patients this could be treated and cured, in others recovery was not possible.
A large number of patients are having problems with the growth of hair, and in some cases these problems are very severe. But there are also patients with normal hair growth. Skin infections are common and are difficult to treat. Most patients are quite used to hospital visits. The children and young people all go to school, but sometimes need extra support. The adult patients have a job or do volunteering. Some of the patients have a social benefit, because of their disabilities. Sad is the story of one of the patients, who could not continue her study because of her illness. She wanted to follow her passion of working with children. Her health seemed to be too vulnerable and the education system was not set up to offer her the support she would need to continue.
The Dutch patient group meets on regular basis, often together with Professor in Dermatology Suzanne Pasmans. She has a chair at the pediatric dermatology department at the Erasmus University in Rotterdam. She is working in multi-disciplinary teams on a regular basis. In this context she evaluated the entire group of Dutch Netherton Syndrome patients. Patients receive regular follow uos in order to get a complete picture of the syndrome. With the increased knowledge of Netherton Syndrome, doctors are now assuming that Neterton Syndrome is not just a skin condition, but instead occurs in the whole body. This is called a ‘systemic disorder’.