Teachers can be said to practise what they teach when they are on a lifelong journey of learning themselves. Especially so when it comes to pupils with rare conditions such as Marfan syndrome. Learning in practical and emotional terms how to approach Marfan students in the classroom, on the playing field and in the school corridor is essential if not life saving. We have noticed a surge in calls to our Helpline from teachers anxious for information on our niche condition and thought to share Dr Child’s resulting advice in this week’s Casebook. We are also sharing some bonus material - advice from a parent of a teenage son with Marfan syndrome.

Q: I am a classroom assistant and need your help. Two new pupils have arrived at my school and they have Marfan syndrome. I have never before come across this syndrome and wonder in practical terms what I should do?

A: What age are these students? This is important to know. Put simply, Marfan syndrome is a connective tissue disorder where one’s body lacks tissue support. The connective tissue which holds the body together, binding skin to muscle, muscle to bone is made up of fibre and ‘glue’. This provides the stretchy strength of tendons and ligaments around joints and in blood vessel walls. In Marfan syndrome, the fibre called fibrillin is deficient in all these locations, accounting for unusual stretchiness and weakness of tissues.

The most serious problem associated with the syndrome involves the cardiovascular system. The mitral valve may blow backwards and lead to heart failure and the aorta can widen and become more fragile leading to dissection.

It is easy to manage pupils with Marfan syndrome if you stick to the practical advice outlined in our Guide for Teachers.

Let’s tackle the classroom first.

Teachers should be made aware of potential difficulties due to hand-wrist hypermobility which are associated with reduced scores on performance test. In formal school testing children may need additional time so as not to be inappropriately penalised. Alternative forms of assessing performance requiring less motor input may be helpful. Children with significant hand-wrist hypermobility may need extra writing time on tests. Wrist or thumb splints to stabilise loose joints may be helpful and large or padded pens or pencils may allow a loose grip to be effective.

A child with Marfan syndrome may be near-sighted and have difficulty seeing the blackboard so printed copy should be provided to the student, who could be seated near the front, and to the side, so as not to block the view for shorter students.

Marfan syndrome manifests in excessive height for age which can also create problems in seating. Chairs and desks should be adapted so that physical discomfort is not incurred.

Now for the playing field.

In the context of sports, high-level competition and contact sports are not recommended. Footballs should not be headed. Basketball should be discussed with the pupil’s doctor. Played as a contact sport it can lead to repeated falls which is not good for the skeleton. Best sports most suitable for Marfan syndrome pupils are are swimming, cycling, cricket, table tennis and golf.

For more comprehensive information click here.

Meantime, one of our supporters, a parent of a 15-year-old has the following advice:

What about bullying? This can be a significant psychological damage just based on constant references to the weather being different up there. It makes the child feel different in an inadequate way. Other children should be made aware of disability and its various forms and taught not to pick on physical differences. Don’t forget the psychological.

Medicines: Sufferers will often be prescribed Losartan and / or Bisoporol and have to follow school procedures with receiving these – giving them in and having them handed out at the right time each day. This is especially important on school trips over more than one day!

Contact lenses: It was a big challenge for my son the first time he went on a school trip; not only did he have all the usual child worries but he had medicines and contact lenses to deal with – you can’t shower in them yet he was really worried about being different and having to take them out and put them in again and a sympathetic teacher / adult helper for him was very important. He also did not want to be seen wearing the bottle bottom thick glasses he had to wear if not wearing contacts.

The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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