Being a teenager can be tough enough, but imagine throwing MS into the mix as well. An increasing number of children and young people are being diagnosed, so the MS Trust is working on a new information resource to help them and their parents make sense of their diagnosis and learn to live well with the condition. To find out more about some of the issues, Open Door went to Great Ormond Street Hospital to meet their paediatric MS specialist nurse, Katie, and two of the young people she works with
How common is MS in young people?
It’s not very common at all. On our caseload we have about 50 to 60 children with MS, next door at the adult hospital they have about 5,000 people on their caseload. On average we’re getting one or two new children being diagnosed every month.
Have you seen an increase in the number of children being diagnosed with MS?
On paper it looks like there is an increase in children being diagnosed with MS, but I think there is also an increased awareness from doctors, and from charities and organisations, and if there is more of an awareness of a condition you are going to be able to diagnose it sooner.
Are the symptoms different to what we see in adults with MS?
The symptoms are very similar and there isn’t much difference in how adults and children present with their MS. But when children are diagnosed earlier, they can start treatment sooner, and in the long run receive a better prognosis.
What treatment is available for childhood MS?
For children there is less medication available because they are not licenced, but we have numerous research trials currently ongoing to hopefully widen the range of medications available. But we do have medications like first line injectable treatments which they can do at home and monthly infusions.
What advice would you give to a parent who suspects their child might have MS?
I would say go to your GP to start with. Don’t use Dr Google because you can freak yourself out. Go and seek proper advice from a neurologist and get the correct tests done. The neurologist will know best so follow their lead.
What advice would you give to a child who has just been diagnosed with MS?
Even though it is rare and might sound scary, you are not alone. Don’t let MS define you; it doesn’t mean you have to stop doing things you enjoy and you should make sure you still live life to the full. Make sure you listen to your doctors and nurses because they tell you something for a reason and just keep going with life and being yourself.
What do you love most about your job?
The number one thing is being able to interact with my patients and see them grow from children to young adults.
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