Had a really interesting long morning at the Masterclass. There was a lot of interest in Vasculitis UK. Sam spoke to doctor who was very interested in the proposed Vasculitis register, he also took a Routemap. I spoke to a GP from Liverpool who took leaflets and a Routemap and was very impressed with us having the website.
All the Routemaps we had, were taken and some doctors have placed orders.
Well done to Richard and Jann who stayed for the afternoon session.
The programme for the morning session was:
The retina – a window on vasculitis?
Mr Nick Beare, Ophthalmologist, Royal Liverpool
The neurologists’ approach to vasculitis (made easy!)
Dr Peter Enevoldson, MD Neurologist, Walton Centre
Optic neuropathy – more than meets the eye?
Dr Elizabeth Graham, Medical Ophthalmologist, Guy’s and St Thomas’s Hospital
Vasculitis brain imaging – more questions than answers?
Dr Anil Gholkar, CD Neuroradiologist, Newcastle Upon Tyne Hospital
I was unable to stay for the afternoon session but this was:
Glomerular Biology and mRNA splicing
Prof Steven Harper, Bristol
Day Case Renal Biopsy: An Audit
Dr Roshni Rathore, Preston
An Expert Guide to Glomerulonephritis Trials and
Patient Recruitment
Prof Lorraine Harper, Birmingham
Lupus Nephritis: What Can Adults Learn from Children
Dr Louise Watson, Liverpool
These Masterclasses are really aimed at doctors and, therefore, they are presented in that way. As a lay person I'll be the first to say lots of the jargon was above my head, but I certainly got the gist of what was being said, especially from the excellent visual aids used - as I think the rest of the Trustees who were there did. What we are going to do is pool our thoughts on the day and I'll produce something meaningful for the next Newsletter/Journal.
Patricia Ann
This looks very interesting albeit challenging to the lay person to fully take in. Coincidently I had a routine clinic appointment with Prof L Harper today and for the first time since diagnosis I had the back of my eyes examined. No sign of vasculitis thankfully but unfortunately she spotted signs of the early onset of cataracts. More than likley one of the side effects of high doses of pred. Hopefully now tht I'm on a low does development will abate.
Sounds very interesting. I would like to know if there will be a Vasculitis Masterclass held in the Nottingham area?
Dear Patricia Anne,
I was most interested, in the 'seminar' that you attended, due to the fact that my vasculitis first 'showed' in my left eye. I wonder if this is common, no-one was too sure fifteen years ago, when I was diagnosed. It does seem like 'they' are making progress, 'in the right field', as it were!
I would be most interested to hearother members views, on the above!
In the mean time 'stay well' everyone!
Kind regards
AndrewT
Hi Derek
These Masterclasses are organised by the Manchester Renal people and are sponsored by one of the drug companies. So as far as I am aware the answer is No. But who knows.
Hi Andrew
Do you mean is it common to first appear in the eye or are you meaning it appearing in one eye? Unfortunately I left my notes on the V-UK table and they are being sent back to me. It was a long and "in depth" day - not helped by a two hour grid-lock on the M62 coming home. So I'm somewhat exhausted today, and without my notes, as an aide-memoire, I don't feel I can remember sufficient to comment. Maybe one of the others, who were more careful with their notes, can help.
PatriciaAnn
Hi again Andrew
Did you see the article on Vasculitis and the Eye on the website?
vasculitis.org.uk/living-wi...
PatriciaAnn
Hi Andrew.
The two eye sessions were interesting. Although making notes was a challenge as they ripped through some of the slides. I suspect that some of the info they were showing was common knowledge for their target audience so they tended to skip through to the meaty bits. But as Pat says, despite the medical jargon I think I got the gist of things.
The first session was about using a new technique for 200 degree, wide field imaging of the retina. They have found that in the periphery of the retina there can be signs of Vasculitis damaging the eye that are not seen with normal imaging techniques. They believe that there might be a correlation between damage to the eye and to that in the brain since the retina is considered part of the central nervous system.
So far they have found that for small vessel Vasculitis, 33% of patients have evidence of retinal Vasculitis. For Wegners it's higher at 47%. They believe that the imaging technique will be useful in monitoring active disease.
The second session was looking at problems with the optic nerve. It was aimed as a guide for those present to differentiate between optical neuropathy in "normal" patients and for those with systemic Vasculitis. As with any type of Vasculitis I think the aim was to get an early diagnosis and hit the patient with steroids as soon as possible in order to limit any further systemic damage.
Finally, like you Andrew, the first really obvious symptom with my Vasculitis was in my eyes. In my case they became inflamed and red but with very little pain or irritation. Interestingly, in an aside, the consultant said that painless red eyes were the most common symptom in systemic Vasculitis. Wish my Opthalmologists had known that...
Excellent Richard. I think that even with my notes - as you say difficult to make notes because they tore through some of the info - I wouldn't have been able to put it as well as you have.
PatriciaAnn
Thanks ,to everyone' who has commented here, quite a lot for me (us all) to digest. I have read it all once, knowing me I'll have to read it all about three more times, before I finally 'get a handle' on it all!! Interesting about the retina being attached to the brain; make sence really dosn't it?
Thanks again
AndrewT
My 10 year old and vasculitis 
Cutaneous Vasculitis (legs)
Just Diagnosed with Systemic Vasculitis
