Newbie here! — Scope | Disability forum

Newbie here!

Karawen Member Posts: 41 Connected
Hi all, Karawen here.

I've only just discovered this group.  I was diagnosed with FSH Muscular Dystrophy in 2011, it's taken a few years to get used to the idea...

Anyone out there with the same condition?

Anyway, just wanted to say hello 👋. 


  • janer1967
    janer1967 Member Posts: 12,855 Disability Gamechanger
    Hi and welcome to the community 

    Feel free to join in or ask any questions 

    I'm sure you will find others who can share their experiences with you 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Karawen
    Karawen Member Posts: 41 Connected
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,043 Disability Gamechanger
    Hi @Karawen - & welcome to the community. Sorry, I haven't got your disorder, but wondering how you're coping, & if you have any specific questions. :)
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 624 Pioneering
    edited May 7
    Welcome to the community @Karawen! A big hello back from me :)

    Great to see that you've already started getting to know a few people on the forum. But I know that you're keen to connect with others who might have experience of FSH muscular dystrophy. Hopefully, there'll be some members who spot your post and get in touch. In the meantime, you might want to have a look around the community. Maybe get involved in some of our different discussions? Or pop by the Coffee lounge to have a chat? 

    It would be nice to get to know you a bit better as well. Do you fancy telling us a bit more about yourself maybe?

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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Welcome to the community @Karawen :)
    Disability Gamechanger - 2019
  • Karawen
    Karawen Member Posts: 41 Connected
    Thanks guys 😌...

    So I'm 41, diagnosed in late 2011 after years of back and forth to the Drs and a misdiagnosis.

    Divorced in 2012, 2 children, 2 grandchildren.  Live with my partner who also has 2 boys and our choccy lab, Coco.

    FSHMD for those that don't know, is a degenerative muscle disease that affect specific muscle groups.

    I've always been very independent despite my condition, no mobility issues (yet).  I do have varying degrees of pain and discomfort but as with anyone, some days are better than others.  My shoulders are the worst affected which bring with it physical limitations as range of movement is limited. 

    It has taken me a few years to really come to terms with my diagnosis but I think I'm there now.  My job makes me realise just how fortunate I am as I work in finance for the NHS within the continuing healthcare team.  

    And that's pretty much me 😉.
  • bankstoe
    bankstoe Member Posts: 12 Connected
    Hi @Karawen

    Yes, I have the same condition as yourself. I am also new to this site and didn't have any mobility issues until around 4 years ago. I have just turned 50 so it was around the age of 46 when i started to notice something was going on. I was diagnosed around 2003.

    I was wearing foot ups for a few years but now i have AFO's on my feet now to help me walk.

    I lost my job due to my condition as I was a Police Officer for nearly 28 years on the front line and was quite fit and active and then all of a sudden things began to change.

    I get support now from the Neuromuscular Centre in Winsford, Cheshire 
  • Karawen
    Karawen Member Posts: 41 Connected
    Hi @bankstoe

    I'm so sorry I must've missed your post somehow?!

    It's nice to link with someone else that has the condition.  I imagine it must've been incredibly tough for you having to end your career in the police 😭.

    I'm very lucky in that my job is a desk job and I mostly work from home.  No mobility issues (yet), although I struggle with some day to day activities.  

    I moved county a couple of years ago and have had a nightmare with the GP and feel as though I've fallen through the gap as I'm now no longer under anyone and get no support.
  • bankstoe
    bankstoe Member Posts: 12 Connected
    I don't go to the GP anymore. I attend the Walton Centre in Liverpool and the NMC in Winsford
  • Karawen
    Karawen Member Posts: 41 Connected
    My diagnosis was 10 years ago this October but I was only referred to a neuromuscular centre yesterday (at my request having seen your post, so thank you).

    Hopefully I'll get better care/ support.  Just a waiting game now 😭
  • bankstoe
    bankstoe Member Posts: 12 Connected
    Yes the NMC will be the best as they know all about your condition and will help you with physio etc.

    I was diagnosed around 16 years ago and had issues but could still manage and do my job. It has been the past 4 years which has been the worse
  • Karawen
    Karawen Member Posts: 41 Connected
    That's good to hear re the support!

    I'm perfectly fine mobility wise, thankfully (at the moment) but things are changing and becoming more difficult.