I was diagnosed with wegener's at 17

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i was diagnosed with wegenr's when i was 17 after being told for 6 months that i had crohns disease. the real diagnosis came as a real shock because it as extremely rare for someone of my age to get wegener's granulomatosis. the only reason that i was diagnosed with wegener's is because i had a problem with my eye - it had swelled shut. when i went to get this checked out the doctor discovered that i was missing the bone and cartilidge from the middle of my nose.

i have now had wegener's for nearly 4 yrs and it's only been recently (after i was given rituximab) that i have started to feel like the old me again. although i am doing fine now i sometimes wish i never had wegener's because when i was diagnosed i was a member of the ATC and due to this illness i had to give it up.

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  • Posted

    hi im a 16yr old girl... ive been diagnosed with wegener's 2 weeks ago after taking ill and spendin time in hospital... me to is in atc im a corporal and workin twards leadership, i wer hopin t join r.a.f as a p.t.i.....dont give up...im not....get bck in ther im sure ur sgt will help or the c.o... surport from the group will help u thru it....even tho sports its a no no in my case......
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  • Posted

    Hi, I was diagnosed with Wegeners in Nov 07 and I have also lost the cartilage in the middle of my nose. Did you have your nose reconstructed ? Did you have sinus problems still?

    I have only just noticed my nose has collapsed because I asked my ENT consultant and he said that it was just the weight gain in my face through steriods that had caused it to look flat but now I have lost weight my consultant has told me I have a saddle nose.

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  • Posted

    chris angel, i haven't had my nose reconstructed as of yet because i want to be sure that my wegener's granulomatosis is completely under control before i get it done.
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  • Posted

    Hi , Thanks for replying . I am going to wait aswell because I keep getting sinus infections .

    I have been researching wegeners online and a medical journal online says that there is a strong link to dust exposure or certain chemicals being the cause of wegeners. I can remember a time at work when I was exposed to dust from a small room that they believe to contain asbestos ,I had to use tags to put on the clothing that were covered in dust .I am not saying that it was cause but it seems strange that the disease first occured in carpenters . Can you remember being exposed to dust or chemicals?

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  • Posted

    Hi Both my Husband and I have Wegener's and no we didn't meet via a support group. We have been married a long time. Doctors have said that due to our unusual circumstances that there must be an environmental cause to our WG. I am interested to hear from anyone who suffers from WG or any Autoimmune disease and has been exposed to wood dust, also wood dust from wood composite boards i.e. MDF/chipboard/particleboard, etc., and has perhaps worked with wood such as a woodworker, wood machinist, carpenter, joiner, wood laminate floor fitter, shop fitter, general builder, etc. or has a partner who has or knows anyone who has?

    I have been researching this subject for some years now purely for personal reasons and have spoken to many eminent Doctors,scientists, professors from all over the world who are leading the way in research in this area. I have also spoken to/been contacted by many people living by wood waste recycling plants and wood composite board factories all over the world who are exposed to these dusts daily and are suffering the same symptoms as we are i.e. nasal problems/nasal erosion/nose bleeds/coughs/increased asthma/itching eyes & skin/pain/fatigue, etc., and increased respiratory/lung illnesses and cancers too. We believe it is the wood dust we are exposed to. We can't all be wrong. Wood composite boards can contain many added chemicals including crystalline silica, solvents, pesticides, preservatives, fungicides, fire retardants, waterproofers, heavy metals, formaldehyde and even asbestos in the 70's/80's. Due to the so called recycling of old waste woods mostly from demolition of old property/buildings they may contain many toxic & carcinogenic chemicals & substances during their manufacturing processes and in the resins, glues, binders, etc., even some that were banned years ago because they caused ill health such as lead from old painted furniture, pesticides, fungicides, preservatives (CAA), for example. 'Wood dust' per se is a classified (by the I.A.R.C. in 1995 based on research on Birmingham UK woodworkers/furniture makers, etc.) known human carcinogen and that includes wood dust from wood composite boards.

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    • Posted

      I have wegeners, and my dad was a wood worker with a shop inside the house. I also helped neighbors muck horse stalls a lot, which were lined with saw dust.

      Diagnosed at age 18.

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    • Posted

      However it was just a hobby and the wood products used in the shop were all natural. I was not exposed to much construction. Just a few occasions. 
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    • Posted

      Hi

      I have been on this site for literally a couple of minutes and your message stopped me in my tracks...

      My 14 year old son has just been diagnosed with wegs and his form room in school is actually the wood work room!

      My husband and I have both wondered before now whether this could have any link at all with his illness which has majorly affected his lungs!

      He has endured a six hour stint in theatre for a thoracotomy to remove a large cyst from his right lung, then 2-3 weeks after surgery he was diagnosed with wegs

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  • Posted

    Hey piglet378, I was diagnosed with wegeners one week before my 18th birthday. This was roughly a year after I started developing gluten sensitivity/celiac disease and 3 months after I cut wheat from my diet. Doctors initially thought I may have had Tuberculosis due to the lesions in my lungs and weight loss (130---->120) as well as the unlikely age for a wegebers diagnosis. I can assure you it much more common for all age groups than we are led to believe.

    In response to the other comments on here re wood dust etc, I had taken a woodworking class for roughly 5 months and always found myself sneezing at the dust. This was apprx 6 months before the onset of wegeners

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