Vasculitis UK News
Vasculitis UK AGM and General Meeting April 201811 May 2018
Vasculitis UK AGM and General Meeting April 2018
A Reflective view in photographs (Full Report will appear in Autumn Newsletter 2018)
Trustees John Mills, Dorothy Ireland and Susan Mills and approximately 60 members including family and friends attended the 2018 AGM
Dr Pani Golaluni: who is a PHD student working with Prof Jayne in Cambridge. Discussed the different types of Vasculitis and causes of inflammation. He talked about the different treatments and maintenance for ANCA vasculitis also to adapt these successful treatments for non ANCA types of Vasculitis. These are currently on trial, and they are especially looking at those who have failed conventional treatment. The ethos has changed now, so they are not just looking at the efficacy of the drug but the wellbeing of the patient and their quality of life.
Professor Peter Rutherford; He is part of the team at VIFOR Pharma developing Avacopan. He talked us through the way the immune system reacts and starts to go wrong. He also discussed testing drugs to suppress the complementary cells so preventing the Vasculitis becoming active. He talked about the ongoing European study; so far only 20 patients, replacing steroids with Avocapan. They still need to increase the test sample and see if there are any side effects. The new clinical trial is 300 patients and will report in 2019. Medical trials are important but so is the patients’ experience. He talked about a new Patient Reported Outcome tool which has been developed in Bristol; which may help for a better outcome and understanding for patients.
New VUK trustee - Jayne Hardman: began her presentation with her party trick of removing her nose. She says it’s been quite a journey. Jayne has raised the profile of Vasculitis with the general public and has very recently appeared on TV programmes in magazines and newspapers. She says” I think I have had Vasculitis 2000 days with her nose problem from March 2012 to January 2018. She was diagnosed with Limited GPA but says there’s nothing limited about it as it affected other areas. Would like to see that definition go.”
Dr Pani, Prof Rutherford and John Mills
Acting Vice Chair Dorothy Ireland presented VUK’s possible plans for the future
Martin, Jayne, Zoi, Leanne and Angharad, Facebook Vasculitis friends, finally get to meet face to face