Aortic Dissection support group welcomes 1,000th member

Posted on 3rd April 2024

Announcing the 1,000th member milestone, Dan Burgess, one of the founders of the AD Buddies group, said:

"Over the past eight and a half years since the foundations were first laid by our dear Buddy Brenda Grunwell, we have grown and evolved into the most welcoming and supportive group for AD patients and their families worldwide. The camaraderie among our members is first class, the support provided is second to none, and the advice shared through our personal lived experiences, together with the expertise of our professional medical advisors when needed, is invaluable. Many in the group will testify that the guidance they received from being an AD Buddy has led to empowerment, comfort, reassurance and in quite a few cases, life-saving interventions."

The AD Buddies use Facebook as the platform for their private support group, which is moderated by a team of four Admins, all of whom have lived experience of Aortic Dissection. The moderated, peer support model means that members can share their stories, questions and concerns in confidence and receive helpful support and advice 24x7. On average, the group sees more than 5,000 posts a month from patients and family members affected by Aortic Dissection. Anyone affected by Aortic Dissection can request to join here: AD UK Buddies.

Chair of the national patient charity, Gareth Owens, said:

"Our AD Buddies group is what our charity is all about - helping those affected by Aortic Dissection. Eight years on from my dissection, the Buddy group is still the place I go to for friendly support. We are fortunate to have a dedicated team of experienced Buddy group Admins in Dan Burgess, Tony Larlham, Bridget Lawrence and Victoria Campbell. Also, in a mutually-beneficial arrangement, all of the UK Aortic Specialist Nurses are members of the Buddy group. This enables them to see and learn from what patients are discussing, while providing professional help and support to our moderators as needed."

The AD Buddy group is so much more than an online forum. The national patient charity now organises three large, in-person AD Buddy Meets a year - one in the North, one in the South and one in the Midlands, as well as countless smaller social gatherings for Buddy hugs and chats over coffee, lunch, dinner and even hotel breakfasts! In addition to these social events, 100+ AD Buddies typically attend the charity's flagship national conferences, Aortic Dissection Awareness Day. This year, the UK conference will be hosted by the Royal College of Surgeons of Edinburgh and the Ireland conference by St. James's Hospital, Dublin.

Dan Burgess continued: "Of course, we have had some incredibly sad times too, with the loss of too many of our dear friends and family members along the way. When we are touched by the sadness of losing a loved one, we all feel it and we express our love and care to the bereaved family, who are invited to join our AD Buddies Bereaved Family & Friends Group."

The AD Buddy group now has members from every hospital treating Aortic Dissection patients in the UK & Ireland, giving the patient charity an excellent insight into national standards of care and regional variations. AD Buddies frequently arrange to meet-up when they find themselves in the same hospital at the same time for appointments, CT scans or even surgery.

Gareth Owens explained: "There is a very special bond created among the AD Buddies, through shared experience of the same life-threatening disease. The first time that you meet someone else affected by Aortic Dissection in the same way you are is truly life-changing. It feels like a burden is lifted and there is finally someone who 'gets it' and is able to help you. The AD Buddies is a club that no-one wanted to belong to, but everyone is very glad that they do."