1. Community
  2. Ears, nose, throat and mouth
  3. Granulomatosis with Polyangiitis

Do you attend Addenbrookes?

Posted , 4 users are following.

dave170448
dave170448

Just wondering how many UK based forum members are receiving treatment at the specialist Vasculitus clinic at Addenbrookes?

0 likes, 16 replies

16 Replies

  • 1wife2dogs
    1wife2dogs dave170448

    Posted

    Hi Dave

    must admit that I'm fortunate to live close to Cambridge and Addenbrookes is my local Hospital otherwise I'm pritty sure I would never have made it through my attack I suppose you call it back in Feb / March still very new to it all and getting my head round things.

    I did go to the Vasculitus Group thingey in Cambridge last Weekend and found that helpful to chat with other affected people.  

    • dave170448
      dave170448 1wife2dogs

      Posted

      Hi

      I have a 2/12 hour drive to Addenbrookes but it's worth it. Spent some 15 years being "managed" by Rheumatology depts in various hospitals - they just did'nt seem to get it. Guess I''m keen to bang the Addenbrookes drum as I see posts from people (can't determine if they areUK based) who are not getting any help from their GPs

      Cheers!

    • 1wife2dogs
      1wife2dogs dave170448

      Posted

      can understand that, my gp was treating me for pneumonia then I ended up in A&E and missed March but still here because of where I went and the fact that they know about Vasculitus
    • dave170448
      dave170448 1wife2dogs

      Posted

      Ha ha, well I've got away with it for 15 years....so every day is a bonus.
  • linda98568
    linda98568 dave170448

    Posted

    I'm based in the USA, I see a Rheumatologist and then other physicians as necessary to treat other body functions as necessary
    • dave170448
      dave170448 linda98568

      Posted

      Thanks Linda

      Hope your care is good? I'm trying to see how many UK forum members are aware of the existence of the worldwide centre of excellence for Vasculitus based at Addenbrookes Hospital in the UK

      Thanks

      PS There is a Dr Peter Merkel working out of the Perelman Center for Advanced Medicine

      in Phil. Top guy for Vasculitus in the world.

      Good luck!

      Dave

    • stephanie3284
      stephanie3284 dave170448

      Posted

      Hi Dave, Im newly diagnosed and I wonder if yoiu know of anyone in Ireland who would be good. I'm currently waiting to see a rheumatologist in the mater hospital as they diagnosed me. Do you think it'd be worth it trying to be seen in addenbrookes if I was willing to go private?

       

    • dave170448
      dave170448 stephanie3284

      Posted

      Hi Stephanie,

      Try St James Hospital in Dublin. They have a team there specialising in Vasculitis.

      Good luck

      Dave

  • maddie26625
    maddie26625 dave170448

    Posted

    Hi. I've just been diagnosed with GPA and I drive 1.5 hours to go to Addenbrooks. They are brilliant. Not sure of how this disease will pan out for me but I'm responding well to initial treatment and hope to continue with a normal life.

    • maddie26625
      maddie26625 dave170448

      Posted

      Yes he's my consultant but I saw one of his team last time. I'm back in to clinic on Tuesday and treatment.

    • maddie26625
      maddie26625 dave170448

      Posted

      I was transferred to Addenbrooks and had a shirt stay before becoming an outpatient.
    • dave170448
      dave170448 maddie26625

      Posted

      Ah, that's good. I'm actually transferring back to my local rheumi in Lincoln. I can't tolerate the journey etc. Last time was 2 hour drive there - 2 hour wait - 2 hour drive back.Too much for my broken spine. But, wish you well.

    • maddie26625
      maddie26625 dave170448

      Posted

      Ouch yes I would imagine that's far too much time with a broken back. I wish you well.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.