Leaflet Launch: Planning Pregnancy with Aortic Disease

Leaflet Launch: Planning Pregnancy with Aortic Disease

Aortic Dissection Awareness UK & Ireland has launched an important new resource for mothers and those contemplating pregnancy, ‘Planning Pregnancy with Aortic Disease.’

Created by Vice Chair of Aortic Dissection Awareness, Haleema Sadia and Dr. Stephanie Curtis, a consultant cardiologist from Bristol who specialises in aortic disease and obstetric cardiology, the leaflet addresses a vital need for more information on pregnancy and aortic disease.

Building on her own extraordinary personal experience of AD during pregnancy, Haleema has said “I don’t want another mother & baby to have to go through what we did” and that “this was all so avoidable.

The Chair of Aortic Dissection Awareness UK & Ireland, Mr. Gareth Owens, said, “This leaflet is a fantastic new information resource for women who are at risk of aortic dissection during pregnancy. It will prevent other mothers and their babies from having to endure the ordeal that Haleema & her daughter Ruqqayah faced, or the tragic worst-case outcome, where some mothers and their babies have sadly not survived.

I commend this leaflet to the medical profession as one way in which we can get better at managing aortic dissection, which continues to be a leading cause of cardiac maternal death and more generally, is responsible for more deaths in the UK each year than road traffic accidents. This is a really important initiative that Haleema is leading. It deserves our full support.

Read the full PRESS RELEASE and DOWNLOAD THE LEAFLET HERE.

 


Cover picture of Aortic Dissection: The Patient Guide

Planning Pregnancy with Aortic Disease

Download the pdf here

Launch of Aortic Dissection: The Patient Guide

Launch of Aortic Dissection: The Patient Guide

Break-out view of Aortic Dissection: The Patient Guide

NEW BOOK LAUNCH –

AORTIC DISSECTION: THE PATIENT GUIDE

Aortic Dissection Awareness UK & Ireland has launched, at the SCTS 2022 annual meeting in Belfast, a major new resource for patients, ‘Aortic Dissection: The Patient Guide’.

Since our inception in 2016, we have campaigned to raise awareness of Aortic Dissection and to improve aortic services for patients.  As more patients survive an aortic dissection, one of their main concerns is how little information is available to help them understand the condition, manage their recovery and manage the life-long implications of being an aortic dissection survivor.

The national patient association’s project lead Cliff Grover, himself a Type A aortic dissection survivor from 2017, explains:

Aortic Dissection: The Patient Guide is written by patients, for patients. It’s a 96-page, A5 paperback handbook containing all the information that we wish we had been given after our aortic dissection. It ranges in scope from the initial hospital stay, through all the stages of recovery to the long term.

The Guide is designed to be given to an AD patient and their family or carers while they are still in hospital.  Our feedback showed that a patient’s family often have to find out on their own about this condition which they had never heard of. The Guide is structured to help the patient and the family during the very worrying hospital stay, and in the longer term.

Over the last 18 months, a team of twenty patients, relatives and carers wrote the Guide, and a multidisciplinary team of seven expert clinicians reviewed and approved the content. We are delighted that both the Society for Cardiothoracic Surgery (SCTS) and The Vascular Society have endorsed the final product with their logos on the front cover.

With our charitable funding in place, and distribution arrangements through our partner Terumo Aortic, we will provide free copies of the Guide to every UK and Ireland aortic centre. Our aim, in partnership with SCTS and The Vascular Society, is that by the end of 2022, every AD patient will receive a copy before they leave hospital. This charitable act represents a long-term commitment to provide a free copy of the Guide to every aortic dissection patient in perpetuity.”

Gareth Owens, Chair of AD Awareness UK & Ireland, said:

“I wish I had been given something like this when I left hospital. It’s such an obvious thing to do. Aortic Dissection: The Patient Guide is a fantastic resource which we are making available free to UK and Ireland Aortic centres, for the benefit of their patients. We’re very grateful to SCTS and The Vascular Society for their support of this initiative and to the President of SCTS, Mr. Simon Kendall, for the opportunity to launch the Guide at the SCTS Annual Meeting.”


HOW TO GET YOUR COPIES

Aortic centres can order a free stock of Aortic Dissection: The Patient Guide to be delivered to their unit by clicking HERE.

The Patient Guide can also be downloaded as a free PDF from our website HERE

We are also aiming to offer the Guide for sale online – details to be announced.

For other enquiries regarding the Guide, please Contact us, or e-mail patientguide@aorticdissectionawareness.org


Cover picture of Aortic Dissection: The Patient Guide

Aortic Dissection: The Patient Guide

Download the pdf here

Association Becomes the National Patient Charity for Aortic Dissection

Association Becomes the National Patient Charity for Aortic Dissection

On 13th April 2022, the UK Charity Commissioners granted Aortic Dissection Awareness UK & Ireland registered charity status, making us the national patient charity for Aortic Dissection.

Our Chair, Gareth Owens, announced this important milestone in the growth of our patient-led organisation by making a short video which you can watch by clicking here.

Patient Leaders Welcome Publication of Life-Saving National Guidance after 5-Year ‘THINK AORTA’ Campaign

Patient Leaders Welcome Publication of Life-Saving National Guidance after 5-Year ‘THINK AORTA’ Campaign

Two survivors of a life-threatening cardiac condition have welcomed the publication of new national guidance to improve the diagnosis of Aortic Dissection, after a 5-year campaign which attracted the support of the Secretary of State for Health and the Presidents of two of the medical profession’s Royal Colleges with a combined membership of 21,000 hospital doctors.

Read the full press release 

Read the RCEM-RCR Guideline 

Press Release 8th March 2022
National patient association partners in TRAVERSING study of Aortic emergencies pathway

National patient association partners in TRAVERSING study of Aortic emergencies pathway

TRAVERSING: TRansfer of thoracic Aortic Vascular Emergencies to Regional Specialist INstitutes Group

Aortic Dissection Awareness UK & Ireland and the THINK AORTA campaign are partnered with experts in the TRAVERSING research group to undertake a national study of the acute aortic syndrome patient pathway, from the point of diagnosis to arrival of the patient in a specialist aortic centre for treatment.

As the voice of patients and relatives affected by Aortic Dissection in the UK, we welcome this expert-led, evidence-based, national study of how to improve patient care and transfer. It is exactly the sort of national, research-led initiative that we have been asking for.

The project starts with a Delphi study to examine the patient pathway and develop a consensus on the transfer of patients with confirmed acute aortic syndrome from diagnosis until their arrival at the specialist centre providing definitive management (‘aortic centre’).

We would like to ask all clinicians in the UK with an interest or involvement in acute aortic syndrome to participate in the Delphi survey, in order to ensure that your views are included in the development of a national consensus for this important patient pathway.

Please click here to access the Delphi questionnaire:

TRAVERSING Delphi Questionnaire

Thank you in advance for your help, which will improve care for aortic patients.

Gareth Owens

Chair

Gordon McManus

Head of Research

Aortic Dissection Awareness UK & Ireland

THINK AORTA US featured on top US Chat Show

THINK AORTA US featured on top US Chat Show

The latest person to champion our global THINK AORTA campaign is none other than US TV chat show host Donna Drake, who invited Carin Andersen and Ben Youdelman from THINK AORTA US into her studio for a live interview all about the Aorta. You can watch Donna’s interview with Ben & Carin here. We appreciate Donna and other celebrities around the world helping us to share the life-saving THINK AORTA message.

For all the latest news about the global THINK AORTA campaign see the embedded Twitter feeds above, and follow us on Facebook: @ThinkAorta and Twitter: @THINK__AORTA, or