Inflammatory Demyelinating diseases are a group of illnesses which affect the coating (myelin) of nerve cells in the brain and spinal cord, and can occur, though they are rare, in childhood and adolescence. Many children recover well from a demyelinating event which may cause muscles to become weak or senses like vision to become poor. However, some have longer term problems or may eventually be diagnosed with Multiple Sclerosis (MS).

Multiple sclerosis (MS) is the most common disabling neurological condition in young adults; however it is often wrongly assumed that it is an older person’s condition and that it cannot be diagnosed in children. Approximately 5–10% of MS cases first appear in childhood but current knowledge about the number of children affected by the condition, how the illness progresses and how it could best be treated is severely lacking.

This project involves two studies. The first aims to find out how many children are affected by demyelination (a first MS-like illness) and MS in the UK and Ireland. The second study will focus on finding out which of the children who have a demyelinating illness are more likely to develop MS, and how this illness develops. Blood samples will be taken from these patients and stored and they will then be followed into adulthood so that this project will provide the basis for an important long-term study.

This project is jointly funded by the Multiple Sclerosis Society and Action Medical Research.

Children and Families

UK & Ireland Childhood CNS Inflammatory Demyelination

UK & Ireland Childhood CNS Inflammatory Demyelination Working Group

Download Information Leaflets:

What is ADEM?

What is Optic Neuritis?

What is Transverse Myelitis?

What is NMO?

 

Medication Information:

Rituximab

Azothiprine

 

Leaflets for Children:

Young Person’s Guide to MS

 

Under development:

Disease Modifying drugs

Multiple Sclerosis

Leaflets for Children