The National MS Society (NMSS) in the US has developed new resources to support families and teenagers living with MS across the country.
Globally, MS is usually diagnosed between the ages of 20 and 40 but children can also be diagnosed with MS. The International Pediatric MS Study Group estimates that around 5,000 children and teenagers live with MS in the US. Like adult onset MS, there is no clear reason why a child might develop MS.
The NMSS has created a handbook for parents and a video to support families to navigate a pediatric MS diagnosis. Stories of young people living with MS bring hope to families in similar circumstances.
One of the young contributors is Doug. One night when Doug was 13, he couldn’t see out of one eye. His family took him to the emergency ward where an MRI scan revealed he had MS. While an MS diagnosis is life-changing for anyone, MS in children and young people can bring additional stress and worry. However, advancements in treatment, medication and healthcare providers specialising in pediatric MS have given young people like Doug, now 18, the tools they need to live their best lives with the disease.
‘After the doctors told me everything they could about it, I realized if I found the right medications, exercised and ate right, I could have control over my MS,’ Doug says.
Knowledgeable healthcare providers have helped Doug and his family learn how to best treat MS and to tackle the disease as a family.
‘We had no idea that they even had treatments available for multiple sclerosis, so that gave us a little bit of relief,’ says Doug’s mother, Sarah.
She also credits credible resources like the NMSS and its efforts to fund ground-breaking research for helping her family move forward with confidence.
‘I know Doug’s doctor has been doing some research that is partially funded by the National MS Society,’ she says. ‘The Society has been great from a resource perspective. Get your education there.’
Doug advises anyone who is newly diagnosed to:
‘Just keep loving your life’.
Similarly, Peter living with MS aged 14 says:
‘Do not panic, it can be a serious problem but it’s not the end of the world. MS doesn’t stop me, just saying. I just feel like a normal kid and that’s it’.
If you are inspired by these stories, click here to explore more pediatric MS resources from the National MS Society here.