What is the MS Trust doing to support young people with MS?
Our recent review of MS related information aimed at those under the age of 18 has shown a gap in our provision and we are therefore working with paediatric services across the UK to develop a new resource on Childhood MS. Whilst MS is often diagnosed between the ages of 20 and 40, the number of people being diagnosed under 18 is increasing. As the possibility of MS in children is becoming more recognised, health professionals are more likely to consider this as an explanation for symptoms experienced by this age group. Given that diagnosis is often a lengthy process, this is a worrying time for both parents and children, especially as symptoms are often overlooked, or attributed to other childhood conditions.
Our initial focus will be on resources for teenagers and we are keen to work with people with MS between the ages of 12 to 18, and also with adults who were diagnosed during that time or who recognise now that their symptoms were evident at that time.
We’d like to hear from people with all different experiences of childhood MS.
Are you under 18 and diagnosed with MS?
Are you the parent of someone under 18 who has MS?
Were you diagnosed before the age of 18?
Can you trace your first symptoms back to your teenage years although your diagnosis came later?
Please tell us what would help
What’s your advice to anyone worried about childhood MS today?
What information would help someone understand childhood MS and get the support they need?
In what format do you think this information should be in? A book, web pages or something else?
You can comment in the box below or email us on infoteam@mstrust.org.uk
If you'd like to support this project, text KIMS21 £5 to 70070 to donate £5
Find out more
- Childhood MS read our current information about childhood MS
I was diagnosed at the age of 19. Looking back my first symptoms arose age 11ish when i had numb tingling legs - felt like tight stockings. At the time doctors shrugged it off as an infection. Looking back i know this was MS. Glad i spent the rest of my childhood unaware of what was to come but nevertheless i am convinced it was a first 'relapse. Happy to discuss further if you like.
Kind regards
Liz Stevens
Take children's pain / difficulties more seriously
Our family are pretty new to MS with my daughter developing symptoms of numbness though her whole body in early Feb spending some time in hospital and awaiting confirmation as the have said suggested MS and I'm pretty sure from my research this will be the out come - her symptoms haven't eased since she first got them.
As a mother of a 17 year old daughter doing ALevels , I found it hard to deal with and come to terms with my daughter feeling so much pain constantly. And helpless in what I can do for her as even a cuddle was painful
Any other parents out there with any advise for stuggling parents and an amazing 17 year old daughter who seems to be handling it better than her parents .
Look forward to hearing from you
My sone was diagnosed at 17 fourth generation of MS in our family. Happy to help if needed
Although I was only diagosed with ms eight years ago Looking back to my childhood I remember having very very severe headaches at the back of my head. They would start for no reason and would be concentrated both sides ay the base of my neck.I would be sent to be and the throbbing would be so bad that I used to think that something would burst. I had tingling and pains in my legs but the doctor would say growing pains.
I think that I can trace the start of my Ms back to my childhood probably to the time after I had Hepatitis or yellow jaundice as it was called then. After that I would be troubled by severe headaches concentrated at the back of my neck the pain would be so bad that I would be sent to bed. I also used to have pins and needles in my legs which were put down to growing pains. After years of symptons which were put down to migraine, ankloysing spondolysis I was eventually diagnosed as having MS 30years later
Many thanks to Maria Glynis Di... and Concerned Parent for highlighting how difficult pain is for youngsters with MS and their parents. If there are other parents who'd like to comment and share their experiences with Concerned Parent on this blog page, that would be really helpful.
I'd be happy to chat to you (Concerned Parent or anyone else) about your experiences by email on infoteam@mstrust.org.uk or call 0800 032 3839 or 01462 476700.
Anyone can call the Enquiries Service on these numbers Mon to Fri 9am to 5pm if they have questions about MS. There's more info about MS pain in our A-Z of MS here https://www.mstrust.org.uk/a-z/pain I hope it helps.
Hi Jacqueline
Thanks for offering to help. Could you get in touch with me direct by email on infoteam@mstrust.org.uk or call 0800 032 3839 or 01462 476700. I am looking for people who could comment on the new information I've written for our website and for people who are happy to share their experiences with me. They would be kept confidential.
Hope to hear from you.
Thanks, OLive Seymour, for sharing your experience. MS symptoms being put down to something else seems to have happened to quite a few teenagers - growing pains, hormones, a virus...... the list is growing.
APOLOGIES!
Due to a technical glitch, we can't reply to the email addresses submitted with comments on this blog. If you'd like a reply or if you are offering to help, please could you get in touch with me directly on infoteam@mstrust.org.uk
Thanks (and sorry about this)
Jane in the Information Team
I grew up in a hot climate and can remember being 10-11 and finding that struggling along a hot car park to almost impossible. I also developed several periods (months) when all wanted to do was sleep. Still some of worst symptoms 40 years later.
Thanks you everyone for your kind words and help sharing.
Jacqueline thank you for sharing this with me :)
If you wouldn't mind it may be helpful to hear how you coped being a parent seeing your teen going through this illness
I can't seem to find and case studies online which I can relate to in the way I feel and cope .
Thanks
This charity is not focused on MS but I wonder if they could help. You could post something in their forum asking for others in a similar situation to get in touch
Contact a family http://www.cafamily.org.uk/ is a charity supporting families with disabled children. They have a helpline on 0808 808 3555, provide publications, run support groups and an online forum to make contact with other families.
Add new comment