Marfans Support Group
About Marfans Support Group
The meeting was held with the aim of giving our patients and their families a better understanding of Marfan Syndrome along with treatment options, both medical and surgical.
Liverpool Heart and Chest Hospital has developed a monthly clinic for patients with Marfan Syndrome and related connective tissue disorders.
The event was organised by the Thoracic Aortic Aneurysm Service at Liverpool Heart and Chest Hospital, in particular Michael Roberts, the Aortic Nurse Practitioner and Sarah Bradley, one of the personnel assistants to the Thoracic Aortic Aneurysm Team.
The Marfan Association Northwest, who provide a fantastic support network for patients and families alike, were represented by Beryl Henshaw, Regional Representative.
About 20 patients and their families attended the forum, which was held in our new conference centre at Liverpool Heart and Chest Hospital. It included the following two presentations:
- the development of aortic surgery and what is an aortic aneurysm, by Mr Manoj Kuduvalli, Consultant Cardiac Surgeon
- the Marfan patient, by Miss Debbie Harrington, Consultant Cardiac Surgeon.
The presentations were well received and there was lots of discussion following both talks.
Beryl Henshaw then presented her patient story and her role within the Marfan Association.
This was followed by a very moving, second patient story by John Perryman which charted his condition and the effect on his life. John was accompanied by his wife Di Perryman who is one of the contacts for the Marfan Association Support in Manchester.