Do you remember when you were 9? Or 15? We might not recall all our youth but there are parts of our lives that stand out. For 30,000+ children and adolescents in Europe living with MS, they have been forced to think about life-events in a way that isn’t typically expected of their age. Their parents and caregivers have to readjust and come to terms with the effects of the condition on their dear child.
On Rare Disease Day 2021, EMSP stands with children with paediatric MS, their parents, caregivers and healthcare professionals. MS is an unpredictable disease that every person will experience differently. Children diagnosed with MS and their caregivers need extra support to deal with the implications of this chronic disease at a young age.
‘I remembered being diagnosed in the room and thinking “Okay. That’s great now we have a diagnosis now we can deal with it”. Little did I know at the time that it was a life-long condition with no cure. My parents broke down. I can just remember them bursting into tears.’ Daniel diagnosed at 15.
Multiple sclerosis (MS) is a chronic, neurodegenerative disease in which a person’s immune system targets healthy nerves. It is most frequently diagnosed in people aged 20–40 years; it can be very shocking for your child to be diagnosed with what is considered an adult’s disease. MS Experts who deal with adults with MS are not experts in dealing with children and experts in the paediatric world have little access to gaining experience about complicated therapies available for MS. Families, caregivers and children are caught in-between and are at an enormous disadvantage. EMSP is working to change this and we need your support to highlight the young lives affected by this condition.
“When a child is diagnosed with MS, life is turned upside down, for the child, for parents and family.” Elin Katrine Vestly, parent of a child diagnosed with MS.
Rare Disease Day 2021
On Rare Disease Day, make an impact for children and adolescents with MS by sharing EMSP social media messages. Together, we’re raising awareness by supporting the young people whose lives are massively impacted by MS via talking to others about the condition and the needs of caregivers of children and adolescents living with Multiple Sclerosis:
EMSP, in collaboration with young people with MS and their caregivers has produced resources for people affected by paediatric MS. Read Caring for Children and Adolescents with Multiple Sclerosis and get involved with EMSP by signing up for the newsletter and staying in touch.