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Any Wegener's Granul sufferers in Central Region of Scotland

Posted , 10 users are following.

mckeejoseph
mckeejoseph

I am making a tentative enquiry to find out if there are any support groups for this illness operating in central Scotland

1 like, 15 replies

15 Replies

  • Debbie_Ley
    Debbie_Ley

    Posted

    Hi,

    If you contact Vasculitus UK formerly known as the Stuart Strange Vasculitus Trust. They will be able to tell you of all the support groups throughout the UK!!

    I have misplaced my last newsletter so I cant help

    Take care Debbie x

  • Samsmam
    Samsmam

    Posted

    Hi I live in Bannockburn was diagnosed in july
  • TWATSON
    TWATSON

    Posted

    Dear Samsmam

    please tell us your story that led to your diagnosis. The stories on this site range quite a bit and are all unique in their own way its interesting to know the background leading to peoples diagnosis.

    Hope you dont mind me asking.

    Regards,

    Tracey

  • Angelfire
    Angelfire mckeejoseph

    Posted

    Hi my name is Ian from Ayrshire had WG since 1994 and there is no support group in Scotland at all but I used to go to local Lupus support group meetings where other people with Auto-Immune diseases would meet you could go to something like that hope it helps

    Ian

  • donna83839
    donna83839 mckeejoseph

    Posted

    Hi I was diagnosed in 2010 and live in Motherwell area,I have had all my treatment and am now in remission 
    • Mikkib28
      Mikkib28 donna83839

      Posted

      Hi Donna just seen this been trying to find different places where to speak to someone. I have only been diagnosed on Thursday and to be honest petrified what to expect. My name is Micheala
    • donna83839
      donna83839 Mikkib28

      Posted

      Hi 

      I was diagnosed 4 years ago ,and treated with large doses of steroids and chemo,I didn't suffer much side effects from chemo to be honest.i am now currently only on long term antibiotics .i am still very breathless ,but always will be .dont be scared.   

    • Mikkib28
      Mikkib28 donna83839

      Posted

      It's all happened so fast , got diagnosed Thursday although my ENT suspected it 4 weeks ago so put everything in place from the. My first app for treatment is Tuesday then biopsy Wednesday not really had a chance to ask questions about it yet. It all started from repeated sinisitus and just always feeling totally floored and unwell. I have a daughter at 8 my main concern is how treatment might affect me, I think I understand slightly what I'll be starting but haven't seen many side affects posted. There's just so much information , hopefully find out what I have too tomorrow just had a million thoughts going through my head.

      Thanks for replying x

    • donna83839
      donna83839 Mikkib28

      Posted

      I was ill at time of swine flu ,under the weather for a few days ,I had repeated visits to go who diagnosed infection in sinus.  Antibiotics failed to clear this, nhs24 visit I then had pneumonia and fluid round heart.  And terrible cough. Lung biopsy came back inconclusive . I underwent open biopsy at jubilee which eventually found diagnosis.    Doctors had lung cancer specialist in to see me ,preparing my family for the worse.   Treatment helped greatly ,and I'm now in remission.   Fingers crossed for you
    • donna83839
      donna83839

      Posted

      Micheala,I know how your feeling ,everything going round in your mind ,I have 2children and was getting up during the night asking my husband was I going to die.its not nice ,I had to be strong for them and face whatever lay ahead . Looking back I don't know how we got through it but we did .us mums do a lot for our families.    You will be strong 
  • Mikkib28
    Mikkib28 mckeejoseph

    Posted

    Iv just been diagnosed on Thursday with this and no idea what to expect. Have my first appointment regarding treatment on Tuesday and I'm terrified . I live in Blantyre Scotland , I am 24
    • donna83839
      donna83839 Mikkib28

      Posted

      Hi ,

      i live in newmains and was diagnosed 4yrs ago,I've been treated with steroids and chemo,I had a rough ride to start with as it took a while to diagnose.i am currently having my medication reduced ,having as many good days as bad . Still very breathless,but I can cope with this .if your under dr murphy ,she is fantastic . Hope your treatment gets underway soon

  • LCTF2013
    LCTF2013 mckeejoseph

    Posted

    The Lauren Currie Twilight Foundation provides vasculitis support groups in Glasgow, Edinburgh and Aberdeen in addition to online support groups.  The next group is on 30th May 2015 at the Glasgow Thistle Hotel from 1pm.  Check out the website for more details at The Lauren Currie Twilight Foundation.
  • Funk14
    Funk14 mckeejoseph

    Posted

    Hi i live centrel scotland was wondering who is treating you. I seem to be getting passed around
  • Anni11
    Anni11 mckeejoseph

    Posted

    I was treated at Glasgow royal at the onset of my probs Dr Max Field who I believe is retired now they didn't do me any favours as it was early days for Wg in 1995 steroids and immuno- suppressives only then came along with cyclophosphamide too late so now all kinds of probs all these yrs later  trachea stenosis 6 ops and counting treatment at Addenbrookes in Cambridge  constant nasal probs breathlessness worse with TS blocked tear ducts , pains in feet hands fingers, gum disease as natural defences lowered by meds causing lack of saliva , scleritis, kidney vasculitis, throw in 2 heart attacks and guess what I'm still hear if I can survive you can too lol

     

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