Thursday, 3 August 2017

Teenage MS

Our colleagues at Great Ormond Street children's hospital in London are looking into developing resources for teenagers with MS. They want to improve their experience in the transition from the children’s to the adult's neurology services. 

The Barts MS team have done a lot of work around communicating MS to families with younger children and we’re really interested in what approaches would work to support teenagers.



If you are a person with MS, were you diagnosed when you were a teenager? If so, what were the issues that were important to you then? Was it telling friends, school, potential employers? Did you transition from a paediatric service to an adult one? Is there anything that you wish you had known or done in the early years? 

Talking to parents of teenagers with different conditions, I realise this is also an important and potentially stressful time for them. Having to “let go” and support their child along the path to self-management. Imparting to them the importance of taking responsibility for their own health. Are you a parent of a teenager with MS? 

We’d really like to hear your experiences and will use them to work with GOSH to improve their transition service. Comment below or email me (a.thomson(at)qmul(dot)ac(dot)uk) if you would prefer.

6 comments:

  1. Thank you.
    I posted this at the Pediatric MS Alliance closed group on Facebook, hopefully some of our UK families will be able to help you out with this.

    ReplyDelete
  2. Hi I've sent an email - we've a teenage support group in Newcastle upon Tyne you may find of interest.

    ReplyDelete
  3. Replies
    1. There were too many Luis, they were cluttering up the discussion.
      Sorry about that.

      Delete
  4. MS in children and adolescents intrigues me a lot.

    The reason why the disease manifests still at this stage, when a good part of us reached is between 20 and 50 years old.

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