Tuberous sclerosis

Tuberous sclerosis, also known as Bourneville disease,  is a rare genetic disease characterised by the development of benign tumours principally affecting the brain, skin, eyes, kidneys, heart and lungs. The consequences are of variable severity but are potentially serious. There is a high risk of epilepsy and also retarded development, intellectual disability and autism when the brain is affected. There can also be a significant impact on health and quality of life when other organs are affected. 

This disease requires an early diagnosis, in early childhood or even before birth, and monitoring by a specialised multidisciplinary team. This is arranged at the Children’s Hospital in the form of regular and systematic consultations with the various specialists. For the comfort of the children and their families the consultations are held on the same day and take place once a year, although sometimes more frequently depending on the age and particularities of the child. The monitoring begins before birth and continues through the growth years of childhood and into adulthood.   As they reach adulthood a transition consultation can be arranged at the Erasmus Hospital. An early screening for epilepsy, before the appearance of the first symptoms, is proposed systematically so as to avert the consequences. Depending on their individual situation, patients can benefit from innovative treatment in line with international recommendations. Our team cooperates closely with other specialists and paramedical teams  at the Children’s Hospital and with specialist teams, for epilepsy surgery in particular, if the child’s situation requires it. We network with GPs and paediatricians, child therapists (physiotherapists, speech therapists, occupational therapists, psychologists etc.), support services, respite care services, associations and psycho-medico-social centres.   

Our team cooperates closely with national and international centres that care for persons with tuberous sclerosis as well as with parents’ associations to achieve a continuous improvement in patient care and to disseminate information on this rare disease and its treatment. 

Children's patients (Children's Hospital)

The multidisciplinary consultation is organised by the Neuroaediatrics Department (Co-ordinating doctor: Dr Anne Monier; Co-ordinating secretary: Ms Daniela Wayllace).

• Coordinating doctor and neuropaediatrician: Dr Anne Monier
• Dermatologist: Dr Pamela El Nemnom
• Ophthalmologist: Dr Sophie Lhoir
• Nephrologist: Dr Khalid Ismaili
• Cardiologist : Dr Hugues Dessy
• Geneticist: Dr Catheline Vilain
• Coordinating secretary: Mme Daniela Wayllace (02 477 39 67)

Adult patients (Erasme Hospital)

The consultation is organised by the Neurology Department (Cons [dot] Neuro [dot] erasme [at] hubruxelles [dot] be (Cons[dot]Neuro[dot]erasme[at]hubruxelles[dot]be))

• Neurologist: Dr Chantal Depondt