09:30 – 10:30 Registration and refreshments
10:30 – 11:25 AGM 2018
11:25 – 12:30 Conference 2018 – Morning Session
12:30 – 13:30 Lunch
13:30 – 16:30 Conference 2018 – Afternoon Session
Tickets to this event are free to members and anyone with Behçet’s disease and their family. You will need to register each person attending via https://www.eventbrite.co.uk/e/bss-2018-agmconference-bristol-tickets-42709026849, letting us know of any mobility, dietary or other needs.
During the past decade, Behçet’s disease (BD) has received focused attention from the biomedical and health sciences; however, the psychological aspects of this disease are still very poorly understood. A team of academic researchers from Liverpool Hope University and Bournemouth University, in collaboration with clinical psychologists from Aintree Hospital in Liverpool, have launched a series of surveys aiming to understand psychological factors of BD.
In a recent paper, published in the Journal of Clinical Rheumatology, they showed that illness perception in BD differs from that of patients with rheumatoid arthritis and cardiovascular disease. For example, people with BD have significantly lower personal control over the illness and treatment, and higher emotional responses, identification with the illness and understanding. Furthermore, patients with BD are more emotionally distressed, which negatively influences emotional adjustment, health-related outcomes and non-adherence to treatment.
The results of this study showed that the way BD patients perceive consequences of BD and identity with the illness mediates the link between symptom activity and pain. Moreover, emotional components of the illness strongly relate to disease activity and energy level.
This study suggests potential directions for clinical psychologists and healthcare practitioners in developing support programmes. For example, targeting perception of the disease identity and perception of the anticipated consequences of BD may reduce sporadic pain-related psychological and physical functions, both alone and as an adjunct to other treatment. Of potential interest for the cognitive behavioural interventions may be specific emotions underlying emotional representations about BD such as embarrassment, guilt and sadness.
People who live with BD need support from partners, family members and friends. At this time, we have a limited understanding of the role of close social support in alleviating the impact of negative emotional appraisal in BD patients. Research linking the effects of social support, negative emotional appraisal and life satisfaction will help to facilitate programmes for patients to enable them to do the things that are important to them, as well as for their families and their close support network to develop the skills necessary to provide support for people with BD.
Addressing psychological aspects of BD will help to manage complex patients effectively. If you would like to help with this research, please complete the survey available at: https://lhubos.onlinesurveys.ac.uk/the-relationship-between-affects-and-perceived-heath-statu
We’re pleased to confirm that our Behcet’s Family Day 2018 will be held on 4th August 2018 at Haven Banks in Exeter.
Please see our Frequently Asked Questions for full details, including how to book your place.
We hope to see many of our members with their family and friends for a great day out.
Click here to find out more information about the Behçet’s Patients Support team.
Read June 17 edition of Rare Revolution Magazine here. The article on Behcet’s on page 38!
If you have Behçet’s and are in employment, then this booklet will help your Employers to understand the condition better and understand their responsibilities and learn how to help you. If you require a copy in the post, please message on firstname.lastname@example.org
Dan is taking part in the Virgin London Marathon next month. You can sponsor him here:
Good luck Dan!
A full report of the 17th International Conference on Behçet’s Disease, which took place in Italy in September 2016, is available here.