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Young people and Multiple Sclerosis

Multiple sclerosis is the commonest neurological disease  affecting young adults. In patients under 30,  treatment needs to be adjusted accordingly.

Neurologist Dr Dachy and MS nurse Christa Expeel share their experience.
Three years ago, at CHU Brugmann, Brussels, we developed a multidisciplinary department for patients with multiple sclerosis (MS) and related neuroimmunological diseases. A neurologist specialised in MS, a resource nurse, two physiotherapists, a social worker and a psychologist endeavour to optimise overall care for the patient by designing an appropriate and customised care pathway. Looking back, we realised that patients aged 18-30 often differ from older patients in their attitudes and behaviours towards their MS, its treatment and monitoring.
Almost all of them are treated with oral disease-modifying first-line treatments, and in some cases, when the disease is highly active or even aggressive, with second-line treatments from the very beginning. They are often of immigrant origin and the second or even the third generation born in Belgium.
The ordeal of diagnosis
It would appear that diagnosis and its notification to young patients have characteristics of their own. Young people are very keen to know the cause of their symptoms and want them to go away as soon as possible. Some of them immediately mention MS as they have officially been supplied with this information in the course of an external consultation or it has been suggested by their family and friends, internet searches or discussion forums.
The length of time required for diagnosis may appear interminable. For instance, they find it difficult to accept the requisite criterion of dissemination over time, even though the renewed use of lumbar puncture may sometimes resolve this issue. However, lumbar punctures can be a difficult experience for young people as this is often the first time they are hospitalised, and they are likelier to suffer post-lumbarpuncture syndrome.
The actual notification of the diagnosis may induce a variety of reactions. Some do not react immediately and a language barrier may lead to misunderstanding of the information supplied. They may panic, become unable to think, not accept reality and reject it. It is too much to bear for them to learn that they have a chronic disease, that they will not get better and that they will have to undergo long-term treatment; they are frightened and fear ending up in a wheelchair. They do not understand why this is happening to them and cannot accept that they are going to have to live with the disease. We also offer psychological support, even though they do not always find the prospect attractive.
Choice of treatment
The choice of treatment is a crucial stage which may last some time despite the fact that it cannot be delayed forever. Young patients want a quick fix, a “magic” treatment that is easy to take.  They need to understand that although a disease-modifying treatment is a guarantee for the future it will not cause residual symptoms or any existing disabilities to go away.
This is also the time when the importance of good lifestyle and eating habits have to be emphasised: of practising a sport or exercising under the supervision of a physiotherapist, or reducing and preferably giving up the consumption of tobacco, cannabis or alcohol.

We encourage them to rely on a trusted adult, a family member or person from their immediate circle, to provide the necessary support. Quite frequently, we also need to deal with the parents’ anxiety even more than with the patient’s actual suffering, taking into account their level of education, cultural practices and the language barriers which may constitute an obstacle to the “rational” approach to the disease as we conceive of it. Some young patients prefer to come alone as they do not wish their family or friends to know and are ashamed of being ill. They are anxious not to worry their parents, who in their opinion would not understand the situation. As for more personal issues such as planning a pregnancy or the formation of an intimate relationship, they may require one-on-one consultations.

Our working principle is to set appointments (check-ups, examinations, imaging, etc.) in agreement with the patients and according to their availability.

Shared responsibility

Once they are feeling better, young patients want to suspend their treatment. Holidays often play a part in this, sometimes due to the atmosphere of insouciance they generate or because the patients wish to hide from their families that they are taking medication and are ill. In the event of a relapse, they tend to impulsively go to the emergency department, which may lead to hospitalisation in an atmosphere of anxiety or panic.

It is important to be aware that young patients can be unpredictable: we need to spend more time with them and make ourselves more available to them, to ultimately ensure that we see them less often – or are able to deal with emergencies such as “I’ve lost the bag I keep my drugs in” or “I’ve lost the prescriptions”. We need to encourage them to keep up their studies, issue medical certificates wisely, understand the patients’ situation without enabling them to use their disease as an excuse for dropping out, and generally act the part of a referee.

It is up to us to be there at such times, without taking over for them, but in order to help them become full partners managing their disease.

When healthcare staff adapt their approach to the requirements of young patients, the result is frequently a genuine, reliable and trusting relationship. After all, MS forces young people to mature earlier and adapt, compromise and negotiate with themselves and other people the way adults do, in the awareness that the road they initially planned to take will have its obstacles and pitfalls. It is up to us to be there at such times, without taking over for them, but in order to help them become full partners managing of their disease.

Mrs Christa Expeel, MS Nurse
Dr Bernard Dachy, Head of Neurology Department
CHU Brugmann, Brussels