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Multiple sclerosis

Multiple sclerosis concerns the nervous system: in places, the sheath that surrounds the nerve fibres becomes damaged, and the messages between the brain and the rest of the body pass less well. Depending on the areas affected, this can concern walking, vision, balance, sensation or concentration.

From one person to another, and in the same person from one period to another, the picture changes a great deal. A persistent fatigue, often at the forefront, frequently comes with these variations without showing on the outside.

Multiple sclerosis has a disconcerting feature: it does not always target the same thing. One flare can hinder walking, the next vision, another the sensation in a hand, with periods in between where almost everything returns to normal. For those around, it is hard to make sense of it when the difficulties seem to move about.

To this variability is added a fatigue that can fall without warning, often made worse by heat or an overly full day. Having to explain again each time that today's abilities say nothing about tomorrow's becomes exhausting. Information available once and for all avoids this constant work of justification.

A situation that rarely looks the same twice

Two people living with multiple sclerosis rarely have the same picture, and fatigue often holds a central place in it. It is not just weariness and can force a pause from one moment to the next.

  • The signs are scattered: they affect different functions depending on the areas concerned.
  • Fatigue can come on suddenly and completely change what is possible during the day.
  • Some difficulties (memory, attention, sensations) do not show but count as much as the rest.

What helps in daily life

The point is to preserve energy and anticipate the variations.

  • Stay cool as much as possible, since heat often worsens the symptoms.
  • Spread efforts over the day and plan times to recover.
  • Have flexibility to adjust the pace to good days as well as less good ones.
Key figures

Multiple sclerosis in a few figures

  • ~ 1 millionadults in the US live with multiple sclerosis (MS).Source: National MS Society.
  • ~ 150 000people in the UK live with MS, with ~ 7 000 new diagnoses per year.Source: MS Society UK.
  • ~ 3 women / 1 manamong MS diagnoses ; the gap has widened over the last 50 years.Source: NMSS ; MS Society UK.
  • 20-40 yearsmost common age at diagnosis ; MS rarely starts after age 50.Source: NMSS.
  • Leading causeof non-traumatic disability in young adults in many high-income countries.Source: WHO ; NMSS.

Possible accommodations

Needs change with the illness and from one day to the next. Flexible accommodations make it possible to follow this changing pace.

  • At school: a PAP (an individualised support plan for school, in France) or a PPS (an individualised schooling plan for students with disabilities, in France), extra time, note-taking provided and an accessible, temperature-controlled room.
  • At work: the RQTH (official recognition of disabled worker status, in France) via the MDPH (the local disability rights office, in France), remote work, flexible hours and a workstation away from heat.
  • In daily life: plan according to the energy of the moment, limit getting around and preserve times to rest.

Explanations based on your profile

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Multiple sclerosis explained to a Child

0–12 years old

Inside our body there are tiny invisible wires that send messages from the brain to the legs, the eyes, and everywhere else. In a person with multiple sclerosis, the body gets it wrong and damages these wires.

That means some days the person is fine, and other days they are very tired or find it hard to walk or to see clearly. It is as if their energy suddenly disappeared, without warning.

The difficulties change all the time: they can start the day full of energy and need to rest in the afternoon. It is not that they are lazy, it is just that their body needs time to recover.

The grown-ups who look after them help them understand their good and bad days, and together they work out how to adapt activities.

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