Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc.
The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is that a clinician does a presentation from the medical point of view and Vasculitis UK will do a presentation from the patients point of view.
What do you think are the unmet needs of Vasculitis patients? Is it all about timely diagnosis and effective expert treatment or do you require more information/ help around living with the various symptoms on a day to day basis?
Things that have come up on the helpline recently include the burden of peripheral neuropathy, the incidence of secondary Sjorgrens ( dry eye and mouth ), fatigue and psychological burden.
I am really interested in YOUR opinions so VUK can represent them to clinical staff.
If you would prefer to e mail privately rather than post on here my e mail address is firstname.lastname@example.org
Thanks in advance