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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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