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Thread: Let's talk about "limited" Wegeners...

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    Question Let's talk about "limited" Wegeners...

    Evening All

    I've wanted to post about this subject for a while now so please excuse my ramblings in advance and everything below is said with the upmost respect for all of us diagnosed with this diease...


    I was diagnosed almost 12 years ago with "limited" Wegeners - it likes my nose and hasnt spread further than this (thanks, in part to the AWESOME team at Addenbrookes and various drug therapies).

    I dont like the term "limited" as it somewhat demeans the experiences of those of us who have "limited disease". My disease may be limited to my nose/ sinuses but the effect having GPA has been in no way limited. Having this disease has never been easy. The effect of having this disease has had an incalcuable, devestating, joyous and profound effect on my life.

    Recently i was on a call with a number of young people with the disease and the one thing that really struck me was those who were limited felt like they didnt have an equal right to explore or voice the effect that this disease has had on them as so many have had it worse than them.

    I thought this was interesting. It has also led me to question why the term "limited" disease is allowed. Now, dont get me wrong i know how incredibly fortunate i am that my diease has not spread BUT my disease is also persistently grumbling (a term coined by Prof Jayne). It means i am complicated. It means my diease is especially devious, sneaky and unpredictable. It also means i have not been taken seriously by some of my doctors when i have felt a flare starting and told my labs are normal, come back in 3 months time.

    I'm putting this out there because i dont have the answer but i want to know how we can address this inequity and put the term "limited" to bed forever.

    Vasculitis awareness months starts soon and i will be exploring this topic both on facebook, among other support groups but it will also be something that i discuss with my treating teams.

    Please let me know your thoughts and experiences.

    If we could change the term from limited, what word would we prefer?
    How should doctors work with those who have limited disease?
    How does being labelled "limited" or "severe" affect your self image?
    Has being labelled as "limited" or "severe" affected the trajectory and treatment of your disease?

    As i said at the start of this post i hope i do not offend anyone with my thoughts, i just want to open this discussion up to a wider audience.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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  3. #2
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    Default Re: Let's talk about "limited" Wegeners...

    I believe some doctors are using the term “mild”. I don’t know if that addresses the issue. (I think not.)
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Let's talk about "limited" Wegeners...

    Luckily I've only come across one doctor who was a bit dismissive. I had lung and hearing damage as well as upper respiratory problems. We all know that GPA can flare up and it may not be limited to the original areas of the body that were attacked the first time. Unless it serves some useful medical need, and I don't know enough about why it was used in the first place, there seems no point in any distinction. An alternative word will still raise the same issues for many.

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    Default Re: Let's talk about "limited" Wegeners...

    I think that "Limited Wegener's" is similar to "A Little Pregnant"

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    Default Re: Let's talk about "limited" Wegeners...

    "Limited' is not in reference to the degree of the disease. Rather it refers to the more specific areas of infection. In that sense it is 'limited' and not through out the body. Mayo doc described it as such.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by John S View Post
    I think that "Limited Wegener's" is similar to "A Little Pregnant"
    Good one!!!😂😂😂
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Let's talk about "limited" Wegeners...

    I think 'limited' refers to forms of GPA that did not affect any major organ, especially the kidneys.

    The symptoms I have are mostly limited to the nose and sinuses, and exist of 'stuffed feeling', headdaches, nosebleeds and so on.
    Also I suffer on and off from the well-known fatigue.
    That feeling affects your whole life, and your ability to perform, same as the tingling, 'deaf' feet, sometimes cold legs and muscle pain troughout the body.
    Nothing 'limited' about it.

    My GPA-specialist says I have to 'navigate' by my nose-complaints.
    In my case: when I have a lot of nosebleeds, I got to take medication again.
    My labs (Anca), that were increased in the first years after I got diagnosed, are normal nowadays.
    Still I have symptoms.

    GPA is called a 'systemic' disease.
    The whole system is involved, even if it is called only 'limited'...
    Living with WG/GPA since june 2010...

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    Default Re: Let's talk about "limited" Wegeners...

    The first rheumatologist that suggested I “might” have Wegener’s said she thought I might have limited Wegeners. She wanted to give me limited treatment.
    I sought out Dr. Villa Forte, who read through my medical history and had my biopsies re-examined. She said that I have regular, run of the mill, Wegeners and treated me for it. I’m doing much better now.

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    Default Re: Let's talk about "limited" Wegeners...

    Hello,

    Limited definitely refers to location not severity. I completely agree how deceptive the wording can be, trying to minimalize our suffering. My most recent Rheumatologist has worded my diagnosis as Granulomatosis with Polyangiitis without renal involvement. Perhaps they are moving away from the word limited.

    My next infusion is 1 year overdue and May 9th cannot come soon enough.

    Warm regards,
    Susan

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by John S View Post
    I think that "Limited Wegener's" is similar to "A Little Pregnant"
    My favourite reply so far!
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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