Cambridge Support Meeting - June 2014

[Geoff]

I had the pleasure of attending the latest Cambridge Vasculitis Support Group meeting recently, where we had 2 guest speakers and also the opportunity to renew old aquantantcies and make new ones! There were about 25 'patients' and about 20 'carers' attending with about 10 Weggies making up the biggest group. I was surprised at the diversity and rarerity of some of the other forms of Vasculitis, I felt quite common!

The first speaker was a "Life Coach" who gave a very frank description of what he saw were the responsibilities of the Coach and also the "patient". The Coach facilitates learning, i.e to move from the present to the desired state. He is to deal with the "here and now" and not with any deep rooted trauma, for which a counsellor would be the preferred choice. The Coach does not place emphasis on imparting new ideas, but rather focussing on supporting others in their efforts to reach a new goal.


"Performance = Potential - Interference" (i.e Negative chatter in the head and fear of losing or crticism)

In a clinical context, "Performance = Self Managment" The Client is the expert in their own life.

The Coach should encourage people with Long Term Conditions to prioritise their health, and to do more to care for themselves. "The Client is the expert in their own life".

The Coach would help the patient to make difficult life changing decisions and he finished off by saying that;

"Health isnt everything, but everything is nothing without it" - How true that is.

It was delivered from the heart, as the speaker revealed that he had developed Wegeners after suffering almost 40 years with Crohns disease.


The Second guest speaker was a Consultant Nephrologist from Addenbrookes Hospital, Cambridge who gave a terrific illustrated talk on "Exploring the causes of Vasculitis" as well as running thru the effects on our bodies brought about by the illness. I couldnt possible replicate the information and conclusions of this talk thru my hastily scribbled notes, and of course the wonderful slides and diagrams convey a thousand words; however I will just jot down a few bullet points that I can recall.

First and formost, especially to me as I have 2 grown up children, the current data available would indicate that Wegeners is not a genetic disease. That being said, the DNA studies that are currently going on would show that our children have a very slight increased chance, say up from 20 ppmillion to 30. Dare I say negligible.

I was interested to hear Dr Willcocks say that research in the UK shows that Farmers have a 3x greater chance of developing Vasculitis. I am pretty sure we have discussed this before on the Forum. It is relevant to me as for 35 years I was a Land Surveyor, spending a fair proportion of my time out in the fields. Could it be a reaction to the pesticides or other alien products? we just dont know.

The Dr continued to say that at this moment in time, although no actual cause can be pinpointed, she believes that it is similar to being dealt a hand of poker, where on their own the cards dont amount to much, but being held or played together, would be enough to "tip you over" the edge. I hasten to add this is my analogy!

Before we get too despondant it is good to point out that in 1960, the average survival rate with Vasculitis was 5 months and 80% of patients died within the first year! Compare that to today where 84% survive the first year and 73% get past 5 years. This good news was reinforced by the notification of new drugs coming to the fore, one called Belimamub (Sp?) which looks to be the "new RTX"
Also because of the intense clinical research going on globally (Dr Jayne at Addenbrookes is coordinating data from 500 patients from 70 centres around the world), drug companies are pouring money into these clinical trials as they can see that there is the likelyhood of a breakthrough in the treatment regime.

Thats pretty much all I can relate on the meeting but, suffice to say, that if you can get along to your local Support Group then please go, as from my personal point of view, they are terrific! We are looking forward now to early November, when the group will reconvene to hear Dr Jayne talk about his findings comparing MMF and Cyclo, also how clinical trials actually work.

[Pete]

Great report, Geoff!

Glad to hear of the advances in therapeutic research. The morbidity statistics were at once sobering and encouraging.

[annekat]

Thanks, Geoff. I'm thinking farmers could breathe a fair amount of dust from their soil, depending on conditions and methods, and that dust would contain silica, which has been indicated as a possible or likely trigger in the past. Of course the pesticides and such would also be suspect. Anyway, info and discussions coming from the UK always seem like a breath of fresh air to me.... not sure why. I'm just glad these support groups and organizations exist and that doctors are so giving of their time and expertise to keep us up on the latest, no matter where.

[windchime]

Thanks for the report Geoff. It was informative and came with good news on the pharmaceutical side. It was nice of you to take the time to give us a report. Again thanks.

[Debbie C]

Yes Geoff,thank you for meeting notes. I wonder when or if this other drug to replace rtx will be on the market. Gives us hope.

[annekat]

Yes Geoff,thank you for meeting notes. I wonder when or if this other drug to replace rtx will be on the market. Gives us hope.

Yeah, me, too, and it would be nice if it was a whole lot less expensive, but somehow, I doubt it.....

[Geoff]

Yes Debra and Anne it would be good to announce such a breakthrough however we were told that its generally 10 years from drug trial to release. I dont know how far down the line Belimamub is but I was put at ease at the latter part of last year when, expressing concern that I had gone thru all the recognised drugs, I was reassured that new drugs would soon be available. I cant help with the cost as even tho we are lucky to come under the NHS here in the UK, the cost of RTX has meant that some primary care trusts have declined patients access to the drug. Fortuantly I come under Dr Jaynes care and he has 'blazed' the trail and established a legal precedent thru the courts to facilitate the availability of RTX.
Fingers crossed we see a positive result from all the clinic trials and research going on!

[lag713]

Thank you for sharing this useful information! Fingers crossed that more options become available shortly!