Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Is there any kind of organisation in the UK dedicated to raising awareness of Acute Aortic Dissection or to raising funds for research into the condition?

 

There are many charities and organisations for the various forms of cancer and other diseases, and there is the British Heart Foundation whose main concern is the prevention of heart disease and the care of heart attack patients, but there seems to be precious little concerning AD.

 

Is there anything any of us can do to improve the situation, either individually or collectively?

 

I'd like to see a National Aortic Dissection day, the establishment of an AD foundation, T-shirts, fund-raising events, etc.

 

Any ideas?

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I have since discovered The Circulation Foundation (www.circulationfoundation.org.uk) the public face of The Vascular Society (www.vascularsociety.org.uk) which is exclusively for vascular surgeons and doctors. The Circulation Foundation has quite a bit of info on abdominal aortic aneurysms but nothing on aortic dissection. Their email system does not work at present but they can be contacted via rebecca@vascularsociety.org.uk to whom I have sent an email asking for details on their lack of AD information. When I get more news, I'll respond here but note that I'm off to Lanzarote on Wednesday for a few days so you may not hear from me for a week or two.

I've had the following reply to my email:

"Thank you very much for your email.  You're absolutely right that we don't currently have any information on aortic dissection on our website, however we are having some patient literature written by the leading expert in the country and once it has been validated in November, it will be going live on our website.

We are a really small medical charity and do not have any patient groups as such, however we are looking into having an online forum where people can come for advice and support from other vascular disease sufferers, would you be interested in something like this?

I am sorry that we have not been able to be of more help to you at this time.  the Circulation Foundation primarily exists to raise funds for vascular disease and support patients and their families, however we are a really small charity, compared to other medical charities.  We really appreciate all the support we are given.  If you feel you would like to share your story with others, we could use your experiences as a case study which could help us to provide more funds for research into aortic dissection, and to raise awareness amongst the general public.  If you feel you could help us in any way, we would welcome any suggestions."

More to follow...

Greg

good one. In a nutshell, NO. In the early days after my dissection back in 2003/4 and even into 2005 I was relentless in contacting everyone I could in regard to this including the NHS, the BHA (who dismissed me on the grounds that Aortic Dissection and AAA was a disease of the circulatory system and nothing to do with the heart ( ?????) ) my surgeons, all surgeons and many more... result was zip. nada. nothing. That's about the time I started this site plus its sister site at www.MechanicalHeartValve.co.uk   (MHV)

Today this site and the MHV site are the only real social media sites with an active membership forum online for both AD and MHV (although there are a number of small Facebook pages and AorticDissection.com) - both of our sites also have a growing Facebook and Twitter following. It's my ambition to get them up to a critical mass of membership and then get some serious PR going.

My problem to get more recognition is two fold. There is scant public interest in AD and even more sadly in the medical profession although it is growing expotentially - and alarmingly - as a fatal condition. This is supported by the growing  amount of legal cases currently going on here in the UK (and the US) for wrongful diagnosis of AD. The medical system in the UK is under enormous strain - as it is worldwide - and diagnosis of AD is tricky and takes valuable resources (read cost - like a MRI scan) so now in many cases junior doctors are overridden by the system or their NHS Trust that they are heavily discouraged - sometimes even forbidden - to go the extra mile for defintive testing for AD.

So, to rev up publicity for AD without a well thought out PR plan is not what we - nor the NHS wants - at all. Hundreds of people suddenly waltzing into A & E with bad indigestion - that they think is an AD - is not what we want.. so its a two edged sword - get more profile on AD and it could backfire. But - on the other hand if we just let this go on - without some sort of action plan  - many more people could/will die needlessly.

I have access to some friends who are surgeons/doctors and am currently talking this complex issue through with them.

The other issue I have is more of a conundrum. Our two sites are growing like topsy and as they grow they take more and more time to administer, keep out the spammers and bad guys, viagra advertisements (??!!) and keep the sites running smoothly. And they cost (a lot!) to host with NING, who have raised their hosting charges by over 40% this year alone. I work full time as a consultant in the Internet industry (travel and tourism) and my workload is pretty intense so I have a real balancing act to do - my clients work/time versus the sites admin/costs ... and sadly I am not able to give the sites as much time as they now deserve - as they are busy and growing as I said. 

I am actually currently considering - if NING hosting costs keep rising - and this is a given.. :-(  (and swapping to another social media platform will be now as expensive and a huge task to boot) that we will have to start charging an annual modest membership fee to both pay for the hosting platform, and maybe to cover the cost for a part time (very part time!) admin person to look after the site. This would also allow the members to share the cost of the hosting,  and we would also have a small "kitty" for some sort of small promotional AD awareness advertising on selected sites... or subsidized t-shirts - or bumper stickers or.. ???

If this is introduced - and it is supported by the majority of members -we could get away with a membership fee of probably between $15-25 USD per annum.  Depends on what we want??

So. Crystal ball gazing! But I would REALLY appreciate ALL members weighing in here. Greg is right. It's time to roll with this....   

Cheers all..

 

Graeme

As far as I see it the only people who really need educating (with respect) are the folks in A&E up and down the UK.  Obviously an AD isn't the easiest or the most common ailment they'll see, but from my experience and from other tales, it's one that's easily misdiagnosed.  And seeing as time can be really against us, misdiagnosis is something that we really could do without.  I don't think a massive campaign is needed just some sort of awareness info to those who see us first.  Their actions can be the difference. 

 

Site > subscriptions ....  That's a tough one.  A lot of people (I'd imagine) would be put off by a subscription fee and wouldn't register.  Which would be a real shame - because from a personal experience, I know just how much reading other accounts, helped me get my head around it all.  

 

I don't think we need any massive budget for campaign strategies (now anyhow) - but if we have to give something back to the AD society then somehow I think we all have some sort of bond given our experiences and would chip in here or there ...

C'mon G man talk £££, none of this USD lark!

Thanks for input Kev. The site is billed in USD hence my currency choice of USD.... I'm still trying to avoid this like the plague but it is getting bloody expensive to maintain this and the MHV site so probably around the New Year there will be a small - and I mean small sub per annum on both sites.. prob £8-10 per annum. I don't think that will put anyone off and if everyone kicks in it will be even less... Anyway I am not doing anything at present on this... later maybe.. myabe i can find a nice kind sponsor but they are few and far between... its all about finding the time as well..

 

cheers

 

Graeme  

Graeme, I really think you should look at other options for funding the site. For example, voluntary donations and/or advertising. A fixed subscription will deter new members and may alienate existing ones, however small the subscription might be. Another possibility is to switch to a free service like Google Sites or go completely Facebook. As far as managing the site is concerned, you could appoint assistant administrators who could share the workload.

Greg

thanks for input. Taken what you said onboard. Re Google Sites - too limited with its apps and actual platform and besides that I dont have the time to change the whole site over - we would also lose all of the 3 year history on the site ..and Google could very well start charging as well... remember this NING platform we use was once free as well ..seems these days - if not always - there is no such thing as a free lunch!

If we go to FB.. same thing re history.. we already have a FB page which trundles along quite nicely....FB is good - but in my line of work I see a lot of things that FB does that are not that good in regard to privacy issues plus again we would lose all the history of/on the current site.. I will probably go to donations first to see if we can cover things that way.. have beaten the bush a few times for advertising but its kinda restricted to medical/pharma advertising and they are rather uncomfortable about advertising on an 'open' site (ie: non-corporate) that allows members to say/ask/comment what's on their minds - good or bad   :-) as they say there is no 'firewall' or 'controlled denial plan' if anything controversial was picked up by the press and they were associated with it 'by default' by advertising on the site  .. As for administrators - we actually have few already.. they welcome new members to the site .. however admin powers are limited and its the html and code work/site structure housekeeping that takes up the time which is something that you cannot ask of part time unpaid *untrained (*web) people ...

I work full time in a VERY demanding profession and as I said this site and its sister site is now a pretty big deal... so something will have to be done soon.. I'm still pondering on it anyway as this site is still part funded by WEGO until next month.. but MHV is not .. so will think a bit more about it... but thanks for input!

cheers

 

Graeme

I am a professional web developer and run my own web design, development and hosting company. Let me know how I can help.

 

Greg

Wooeee! Now you tell me!!

 

thanks for the heads up Greg..  :-)  .. yes can CERTAINLY use your skill base. Seems there are a few of us older 'kids' in the web design area.. nice to see another one over 30   ha ha...

 

 cheers

 

Graeme

 

Just browsing as I do and came across this post from way way back regarding organisations that are great within the research for Aortic Dissection.  I saw the circula foundation mentions that they are planning to pet info live on their site in November 2011 .... Ok it's 2016 now I just went to their page and searched aortic dissection out of curiosity ... guess what sigh no results found .. I got a hit when I searched Aorta which came back with AAA info... there is a fund raising organisation that do a lot for aortic dissection nowadays but thta's not why I'm posting this to highlight them... I just get really peeved when I see nothing changes.

Hope all is good with you and yours Graeme :)

And you too Greg

Regards

Dan Burgess

Hey, thanks Dan.

Have a good Christmas

Greg

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