SVT Fundraising

The vascular studies unit (VSU) at Addenbrookes hospital are running the Cambridge half marathon in aid of Annabelle’s challenge, a charity in support of patients and their families affected by Vascular Ehlers-Danlos Syndrome (Vascular EDS).

We were asked to run by a lovely patient, Clare, who we have got to know well during her visits to the department.

Vascular EDS is a rare disorder and as such often leads to complicated and challenging patient experiences like Clare’s. As such we want to help raise awareness for this condition.

Clare has written a piece about her experience of Vascular EDS; with her permission some excerpts from this are attached below.

‘Before my first major vascular episode, I believed that my greatest challenge in an acute medical event would be to make sure that the doctor knew I had a diagnosis of VASCULAR (not hypermobility) EDS, and therefore at risk of vascular complications and hollow organ rupture. I soon learned that it is far more complicated. Following several difficult experiences in A&E, I think I finally understand the main problems. I wish I had understood these specific issues before I had my first aneurysm, rather than just having a broader expectation that I would face problems because the condition is rare…

A large proportion of a doctors’ knowledge will depend upon their clinical experience, which will be different for each individual. A doctor explained to me what he called the ‘unknown, unknowns’: There are things he knows that he knows, and there are things he knows he doesn’t know. But then there are the things he doesn’t know that he doesn’t know. VEDS frequently falls into this category...

As a patient, my advice is never to rely solely on the expectation that your symptoms will be investigated if you feel in severe pain. But I have learned that for me, severe pain (however it is perceived by a doctor) has always been a crucial indicator of a serious vascular complication. Experience has made one thing very clear to me, and that is that a VEDS patient in severe pain should not be discharged from A&E. Even if investigations indicate that there is no major vascular event occurring, because presentation of complications in VEDS patients can be subtle and unusual. Senior and specialist advice must be sought under these circumstances.’

For the full article please follow the link: https://www.annabelleschallenge.org/clares-story

Any donations would be greatly appreciated for this group of patients who by no fault of their own, suffer a significantly shortened and more difficult life. We are the rare health care professionals who spend the majority of time with this uncommon patient group and get to hear their stories therefore hopefully, we are more aware than most how impactful this condition can be.

If you would like to sponsor us and Annabelle’s challenge you can find our Just Giving page at: www.justgiving.com/fundraising/vsuforac

Happy new year!

Isy, Ryan, Harry, Laura & Matt

THE LONDON MARATHON 2022

The Virgin Money London Marathon is the largest annual fund raising event event  – runners have raised more than £1 billion for good causes since the race began in 1981.

London Marathon's 2022 event is planned to go ahead Sunday, 24th April 2022. If you want to run for the Circulation Foundation then please register your interest by emailing info@circulationfoundation.org.uk

 

Thank you once again and if you do require any further information please contact info@circulationfoundation.org.uk