This is a very informative and interesting article.. In Lauren's case, it is particularly sad as she was Grant and Adrienne's only daughter. Unfortunatly, John and I still learn of too many similar cases where the Vasculitis has gone unrecognised and undiagnosed until it is too late to prevent serious organ damgage, disability or death. This article highlights how it is essential to recognise and diagnose the disease, so prompt and effective treatment can result in a happier outcome. John is attending the British Society of Rheumatologists meeting in London on Thursday of this week, as Chairman of Vasculitis UK and a patient representative who has WG. This is a working group to agree revised guidelines for the treatment of ANCA associated Vasculitis. The LCTF works to raise awarenss and funds research at Aberdeen University in Scotland.
Problem is Llinos it is still happening.. there is a young girl seriously ill in hospital at the moment, her mum is beside herself... this girl has still not had a proper diagnosis..and she has seen three different consultants...
Just read the article and unfortunately I was diagnosed after I developed saddle nose deformity and endless visits to my Gp. I finally got diagnosed by Professor Chakravarty.
My Gp had heard of Vasculitis but had never seen anyone with it. They now have a poster about Vasculitis, which i requested be put up in the surgery with the signs and symptoms clearly visible in the waiting area.
The more we can promote awareness the better for future patients.
Sending best wishes to the poor young girl in hospital.
It's a good opportunity to raise awareness. I have sent an e-mail to my GP's surgery with a link to to this article, along with a link to Vasculitis UK of course.
this is a tragedy and I hope it has helped her parents that the mail is publishing her story where someone might read it and be dx'd early. It must have been hard to do, but a lovely tribute to their daughter, Lauren.
I had hoped that the medical profession was more aware. I was dx'd in 1994 after 2yrs - also with saddle-nose,but I had lost my voice [ it did come back]. I attended the final exams for new drs and they seemed well informed, Also presentations to hospital staff, doctors and gps. Sadly, when the consultant who organised these left, the requests to attend stopped.
Please take hope from the fact that I've had wegeners [gpa] for 20 years and have been without a flare for at least 7 years. It is medically controlled and I have been on the same low dose medication for 8 years.
I am afraid unless the medical profession comes into contact with Vasculitis more regularly it can soon be forgotton as sandra has said. John's consultant retires in 2 months... John will be teaching the new guy all about Vasculitis....
Since John took over as chairman of Vasculitis UK in April 2009, Vasculitis UK has been working so hard to get improved recognition, better diagnosis and better treatment. The Vasculitis Route Map was one significant step in this process. The new website another.
As i have already said, on Thursday John, as Chairman of Vasculitis UK and as a patient representative with WG (GPA) will be at a meeting in London of the Working Group of the British Society of Rheumatologists which is reviewing, revising and updating the guide lines for treatment of Adult ANCA Associated Vasculitis.
Vasculitis UK has also been working with Dr Paul Brogan, who is the UK’s leading expert on Paediatric Vasculitis to make the paediatric guidelines more readily available for clinicians throughout the UK. John, as Chairman of Vasculitis UK is also a member of the influential Vasculitis Rare Disease Working Group. This group is working to find better systems for diagnosis, better systems for assessing disease activity and of course better treatments.
Vasculitis UK is also giving financial and practical support to the new Vasculitis Registry, which is a data base which will record information about all the people who are diagnosed with Vasculitis in the UK, the treatment they receive and how they progress. This will be an invaluable tool for those doing research in Vasculitis and will eventually lead to a better understanding of what causes Vasculitis , how best to diagnose it and how to treat it most affectively both in the short and the long term.
The past two years have seen great advances in diagnosis and treatment of Vasculitis, unfortunately, these advances have come too late for Lauren and too many others we know of
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