Hereditary Multiple Exostosis or similar condition?

merlin1976uk
merlin1976uk Online Community Member Posts: 3 Listener
edited October 2018 in Everyday life
Hi all, 

I'm new here and I was just wondering are there any other people who suffer from Hereditary Multiple Exostosis or similar condition?

I was diagnosed at age 5 with the condition have had multiple surgeries and had one osteosarcoma removed.

My wife and I are proud parents to our son Orion (5yrs old) and identical Twin girls Andromeda and Aurora 3yrs old next month)
We live in Preston and due to my condition I'm a stay at home dad and Rosina will be working at a university come January.

We cannot be certain if our children have HME yet as they haven't actually been able to pin point the actual condition I have the closest they can say is that it is HME related I'm currently taking part in a research project called 10,000 genomes project this is to try and pin point what I actually have cause so far they don't know all they do know is it is 'like' HME but it doesn't flag up on the usual genetic markers for HME 

We enjoy going outdoors as much as my body and pain will allow and lead as active a life as possible, we love visiting old castles and places of interest.

I am on DLA used to be on incapacity benefit but then they stopped that with universal credit.

But anywho I think I nattered on long enough lol

Comments

  • merlin1976uk
    merlin1976uk Online Community Member Posts: 3 Listener
    Sorry DLA is PIP still can't get my head around the change lol
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @merlin1976uk

    Welcome to our site/community.

    I am one off our “Community Champions”

    Please please have a good look around as we have got many members who will help /support you.

    I do hope that one of our members will contact you shortly???

    Pease come back to me if you have any problems & I will see if I am able to help you further.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @merlin1976uk, and a warm welcome to the community! Great to have you here.

    Thanks for sharing this with us. I've had a look around and you appear to be the first person discussing Hereditary Multiple Exostosis! Would you like to tell us some more about it?
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Welcome to the community @merlin1976uk :)

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