«Mr Calabrese, how do you recognise an MS relapse?»

On average, underage MS patients are 13 years old when they are diagnosed with the disease. Are girls affected more often than boys? Doctor Pasquale Calabrese provides information.

Mr Calabrese, how common is multiple sclerosis in childhood?

The diagnosis is made before the age of 20 in around 10 per cent of cases. Most patients are in puberty, on average they are around 13 years old. In addition, more girls are affected. It is assumed that this gender bias is genetically determined, as it is also seen in adult MS patients. There, the ratio is almost two to one.

«MS is often diagnosed too late.»

Physician Pasquale Calabrese

That is not a small number. Nevertheless, it is hardly known that the disease occurs in minors. Why is that?

MS often disguises itself behind age-typical symptoms. A typical symptom such as inflammation of the optic nerve can also have completely different causes in children - for example an allergy. Tiredness is also a typical symptom of MS, but is quite normal in adolescents. In addition, children recover much better from relapses than adults. The first relapse is often followed by a long, disability-free phase of the disease. For these reasons, MS is often diagnosed too late.

With what consequences?

General prognoses cannot be made. One thing is certain: the earlier treatment is started, the better the chance that a relevant disability will not occur or will only occur much later. In general, it often takes up to 20 years for children to develop permanent impairments, whereas this period is only around half as long for adults. However, this does not apply to so-called high-risk patients. This is the case when disabilities become visible in the first few years of the disease or a high frequency of relapses is observed.

Prof. Dr. Pasquale Calabrese leitet die Arbeitsgruppe Neuropsychologie und Verhaltensneurologie der Universität Basel. Er forscht zu MS bei Kindern und Jugendlichen, berät aber auch betroffene Familien. Er ist zudem als Berater für die Schweizerische Multiple Sklerose Gesellschaft tätig.
Prof. Dr Pasquale Calabrese heads the Neuropsychology and Behavioural Neurology working group at the University of Basel. He conducts research into MS in children and adolescents, but also advises affected families. He also works as a counsellor for the Swiss Multiple Sclerosis Society.

MS progresses in relapses. How do you recognise them?

Optic neuritis is common. Visible symptoms also include balance problems or paralysis of the arms and legs, which results in a reduced ability to walk. Invisible symptoms are almost even more problematic: Memory, concentration or attention problems. Depression or speech disorders are also included.

What are the consequences of these cognitive disorders for school-age children?

Affected children have difficulties absorbing or memorising school material. The child may therefore need more breaks or compensation for disadvantages in examinations. Such adjustments and targeted support require an alliance between children, parents, neuropaediatricians and the school teachers concerned. Unfortunately, this is still happening far too little.

Multiple sclerosis can lead to concentration problems, among other things.
Multiple sclerosis can lead to concentration problems, among other things.

Can it also be a disadvantage to inform friends and school?

Stigmatisation and discrimination occur. Young people are in a phase in which they are coming to terms with themselves and their peers. They want to belong. The illness can result in major setbacks here: in sport, going to the disco, getting to know girls or boys. For these reasons, I recommend age-appropriate psychological support or counselling as a supplement to drug therapy.

What difficulties arise for affected parents?

For parents, it is a tightrope walk between being under-challenged and over-challenged. Many find it difficult to assert certain authoritarian demands despite the illness, such as keeping to certain times or maintaining order. Is the exhaustion due to illness or is the child too lazy? In order to be able to better assess such questions, counselling is also recommended for affected parents.

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