Vasculitis Research

Suzy on the VasculitsUK forum has just posted this:

healthunlocked.com/vasculit....

To support a proposed research study into access to timely and coordinated specialist care for vasculitis patients, we urgently need very brief accounts of people's negative experiences of delayed recognition and diagnosis or uncoordinated or inappropriate care.

Maximum 100 words by mid-night Tuesday 29th August!! So no pressure!!

No replies will be accepted here in HealthUnlocked community only replies sent by email to John.mills@vasculitis.org.uk or susan@vasculitis.org.uk

Those of you who have GCA that was not recognised quickly please respond - especially those who have lost vision because of the delay.

They can have all the fast-track options they like - you have to get past the GP first and sometimes even the rheumy! So any research that highlights this is going to benefit us.

6 Replies

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  • Mmm dornting.

    Let's see how I go this week

    Back to downing after holiday. 😳😬

  • Do they want info on delayed diagnosis of PMR too?

  • Not sure - I sent a message about my 5 year delay in getting a PMR diagnosis but I do have doctors here who agree with me it is probably borderline GCA, just not affecting vision.

    If they don't want PMR, they'll ignore it and it only takes a minute to do.

  • Initial diagnosis was TIA but wasn't comfortable with it. Had a second opinion and doctor agreed and checked me into diagnostic assessment unit in North Shore hospital in Auckland (NZ). Tests, scans, positive temporal biopsy pointed to GCA. Prednisone started immediately in Dec 2016. There would have been less of a delay (of three weeks) if I hadn't thought it was the 'flu, but the onset of visual auras scared me. Hospital Rheumatologist (with GP backup) is monitoring assessment and treatment. Now tapering off steroid, everything went to plan. No pain, no headaches, no visual disturbances. Just lessening side-effects to grin and bear. Doctors are confident life will be back to normal in a few months' time.

    (Hope I haven't missed your deadline - being in NZ, we are hours ahead, so chanced it!)

  • Sondya, did you send those comments to the email in post?

  • Oops. I thought writing it down here was good enough! Ah well - not a major.

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