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  1. Need your help... research questionnaire

    Hi, I hope it's ok to post this link here.


    Cardiff University are launching a research project, and are looking for participants of child baring age to fill in the attached survey (UK only...
  2. I started this today, what do you think?

    Random Acts of Kindness by Gwenllian Hill - GoFundMe
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    I get the sweats even without pred, esp at night....

    I get the sweats even without pred, esp at night. Hope your symptoms settle down soon, stay strong X
  4. Thread: ulcers

    by gwenllian111
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    Thanks for the reply.... nice to know i'm not...

    Thanks for the reply.... nice to know i'm not alone :blushing:
  5. Thread: ulcers

    by gwenllian111
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    I didn't know that vasculitis could cause ulcers...

    I didn't know that vasculitis could cause ulcers anywhere...does anyone know why this is?

    X
  6. Thread: ulcers

    by gwenllian111
    Replies
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    737

    ulcers

    Does anyone suffer with ulcers 'down below' caused by vasculitis/WG?
    :predrage:
  7. Thread: Iron

    by gwenllian111
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    My ferratin levels are always low, which i'm...

    My ferratin levels are always low, which i'm meant to be on iron for. No known reason for it.
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    I don't have it, although my septum is deviated. x

    I don't have it, although my septum is deviated. x
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    Good post. I have to have a health interview...

    Good post.

    I have to have a health interview (UK) on friday, to see if I really am 'sick'. I look okay, so goodness knows how this is going to turn out.

    I feel so unwell all the time now (i'm...
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    Subglottic to bronchial

    Hi everyone - anyone gone from having sub glottic stenosis to bronchial stenosis? If so did your symptoms differ slightly? I'm more breathless now talking and I can't clear my phlegm up as easily as...
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    Phil and Alysia

    Hi guys,

    I have set up a fundraising page for Phil, to help financially during this difficult time.

    The page is here Help support Phil by Gwenllian Hill - GoFundMe

    Thanks for reading this...
  12. Thread: Hey guys

    by gwenllian111
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    Hey guys

    Hi everyone how's it going?

    Have been following most on Facebook...but thought I'd pop on here and ask some advice, as you guys are the experts. :)

    I've been in 'remission' for a while now,...
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    Hey guys Any updates? Just thought I would...

    Hey guys

    Any updates?

    Just thought I would chip in with my sympathises about the 'nasty nurse' scenario, jeez, I've been there!

    How are things looking now?
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    Yeah, i've tried Ritix but I am allergic to it....

    Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening! :rolleyes1:

    X
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    Primary Immune Deficiency (PID)

    Hey guys :flapper:

    I've been on Immunologlobulin Infusions for a long time now, because my body doesn't make enough antibodies.

    Does anyone else have this?

    Basically, I was having...
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    Even if your ANCA neg (which I am too!), it...

    Even if your ANCA neg (which I am too!), it doesn't mean you don't have WG. It's not a definitive marker for dx. X
  17. Thread: Steroids

    by gwenllian111
    Replies
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    Honestly, i'm terrified of being put back on...

    Honestly, i'm terrified of being put back on pred. Last time I started having psychotic hallucinations, and severe depression (to the point that I wanted to end my life).

    :(
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    At the end of the day, you KNOW your body better...

    At the end of the day, you KNOW your body better than anyone else. It's so hard to be strong with doctors when you feel unwell anyway, it's so hard. :thumbdn:

    I find it hard to explain to my...
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    Patient Care - comments needed!

    Hi

    I'm writing a book about the care patients receive (regardless of disease). For example, being turned away at ER, doctors being unsympathetic, - or, of course, the complete opposite - have you...
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    How are you Phil?

    How are you Phil?
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    Email [email protected] with vasculitis in...

    Email [email protected] with vasculitis in the subject line, requesting an application form! :thumbsup:
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    Calling all vasculitis sufferers....

    The Discovery Channel are calling for those who have vasculitis, to help them
    make a series of programmes. They will pay for any specialist care you need, if you appear on the show.

    The company...
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    I'm okay...good days vs bad days. :) I have...

    I'm okay...good days vs bad days. :)

    I have major re constructive surgery on my airway in a few months time. Nervous, but I know it's the right thing to do.

    How are you? X
  24. I am a veggie. In fact 'weggie' always reminds me...

    I am a veggie. In fact 'weggie' always reminds me of a 'veggie' (burger). X
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    Hi everyone! How are you all?! Just to let...

    Hi everyone!

    How are you all?!

    Just to let you know that the Airway Stenosis Patients' Association (ASPA) charity is now official and live!

    The website is Airway Stenosis Patients...
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