Do you attend Addenbrookes?

Allergies, blood and immune system
1

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

2

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.  

3

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!

4

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

5

Dead right there!

6

very almost dead anyway

 

7

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

8

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

9

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

10

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?

 

11

Hi Stephanie,

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

Good luck

Dave

12

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.

13

Hi Maddie

Are you seeing David Jayne at Addenbrookes?

14

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

15

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

16

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.

17

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