Wegener's Disease

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    Vasculitis awareness month

    May is vasculitis awareness month. Find out more at https://www.vasculitis.org.uj #Vasculitis #WegenersDisease #TakayasusArteritis

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    I want air! #Breathing  #WegenersDisease

    In seven years, I have had 10 separate airway surgeries to treat my #WegenersDisease. The last 3 were in  #2019 alone - January, July and November.

    Since November, I've had two airway steroid injections. The last one was in February.

    My 3rd injection was canceled due to #COVID19. I'm now scheduled for May.

    But quite frankly, it's too late. I can't breathe again. I need surgery again.

    #COVID19scares the crap out of me. My anxiety about it grows each and every day. If I end up on a #Ventilator , I'll never come off. This disease will kill me.

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    Podcast: shielding during COVID19

    So this week I have been interviewed by the lovely US The ride, the vasculitis journey. It really was fun. Whilst you are self isolating have a quick listen.

    anchor.fm/Vasculitis-Journey/episodes/Dispatch-From-Across-T...

    #ChronicIllness #vasculitis #raredisease #WegenersDisease #TakayasusArteritis #AutoimmuneDiseases #InvisibleIllness #shieldinguk #COVID19