Support the caregivers of children and adolescents living with multiple sclerosis (MS)

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Elisabeth Kasilingam
Elisabeth Kasilingam signed this petition

Did you know that the number of children and adolescents living with multiple sclerosis (MS) is increasing worldwide?  

Today, there are approximately 3 to 11% cases of MS being diagnosed before the age of 18. A diagnosis of MS at such a young age can place extra demands on caregivers who are often their parents.

Parents of children with MS are the first caregivers and have a considerable impact on the quality of life of their children. Therefore, the needs of those caregivers should be heard not only as they voice their own needs but also as representatives of the voices of their children.

The European Multiple Sclerosis Platform (EMSP) identified paediatric MS as a priority in its Code of Good Practice. EMSP identified the areas of concerns for priority actions across Europe to address the needs of the caregivers of paediatric MS:

  • Parents demand for more psychological support, especially around the time of MS diagnosis.
  • They also ask for better information about MS, treatment and MS management from healthcare professionals.
  • Parents call for more practical support, including for better financial support from social care systems to undertake caring responsibilities.
  • They request that their children living with MS are better supported by schools as their loved ones are facing fatigue and cognitive issues.
  • Parents would also like to have stronger social support networks to cope with their challenges.

Help us to drive the European Union and the national governments in Europe to reform the health and social care systems, in order to address the needs of those affected by chronic conditions such as MS and to reduce the huge gap between European countries in terms of support available for those impacted by these diseases.

Show your decision makers that ensuring the wellbeing of paediatric MS caregivers – as well as those who they care for – should be a priority.

Sign our petition!