BSS 2018 AGM and Conference

Our 2018 Conference and AGM will be held on Saturday 20 October at the Doubletree by Hilton Hotel in Bristol. This is only 5–10 minutes’ walk from Bristol Temple Mead Station and has complementary parking and disabled badge holder parking on site.
The venue is fully inclusive and accessible. The hotel has some fully accessible rooms, and guests will be able to obtain the special conference room rate – please say that you are attending this conference when booking. There are many other hotels and B&Bs close to this venue, including Novotel and Holiday Inn Express (opposite the station).

Programme 2018


09:30 – 10:30 Registration and refreshments

Join us before the AGM and conference starts for a tea, coffee and pastry.
This is a great chance to meet trustees, members and families also affected by Behçet’s.

10:30 – 11:25 AGM 2018

Welcome and report from the Chair: Tony Thornburn
Financial report: Alan Lane
News from the Society: Judi Scott and Gemma Darlow
The Judith Buckle Award: Richard West
AOB: Questions from members

11:25 – 12:30  Conference 2018 – Morning  Session

11:25 – 11:30 Introduction: Rachael Humphreys
11:30 – 12:00 Post contract, how have we done? Professor Farida Fortune CBE
12:00 – 12:30 The Eye in Behçet’s Disease: Professor Miles Stanford

12:30 – 13:30 Lunch


13:30 – 16:30 Conference 2018 – Afternoon Session

13:30 – 14:00 Why are Behçet’s patients always tired? Dr Amal Senusi
14:00 – 14:30 Nutrition for Behçet’s patients: Professor Farida Fortune CBE

14:30 – 14:50 Tea, coffee and cake break

14:50 – 15:20 Diet and Microbiome in Behçet’s Disease: Dr Graham Wallace
15:20 – 15:50 Behçet’s Patient Centres update: John Mather
15:50 – 16:25 Medical Panel Q&A
16:25 – 16:30 Conference close

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.

July 3rd, 2018

Can you help with a survey?

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

July 2nd, 2018

Behcet’s Family Day 2018

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.

July 2nd, 2018

Behcet’s Patient Support at the Centres of Excellence

Click here to find out more information about the Behçet’s Patients Support team.

February 12th, 2018

BSS Annual Report and Accounts 2017

Annual Report and Accounts 2017

October 12th, 2017

Bio-Behcet’s Research Trial

Click on the poster and contact details below:

August 25th, 2017

Rare Revolution Magazine – Behcet’s article

Read June 17 edition of Rare Revolution Magazine here. The article on Behcet’s on page 38!

 

August 22nd, 2017

New Booklet for Employers!

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 info@behcetsdisease.org.uk

2017 Behcets for Employers 24 page doc

 

April 18th, 2017

Dan – the Behcet’s Marathon man!

Dan is taking part in the Virgin London Marathon next month.   You can sponsor him here:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=DanielHumphreys3

Good luck Dan!

March 27th, 2017

International Conference report

A full report of the 17th International Conference on Behçet’s Disease, which took place in Italy in September 2016, is available here.

February 19th, 2017

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