Drug Recall – What should you do? | July 19th, 2018
Hypertensive and heart medication containing valsartan has been recalled around the globe, having been contaminated with a substance believed to cause cancer.
One of the most important aspects of this recall is that those taking valsartan understand that they should not stop their treatment before seeing a medical professional.
MyTherapy have created an infographic explaining the key points regarding the valsartan recall.
With 1 in 3 people living with hypertension, it is likely you and your readers know of someone taking valsartan. We therefore encourage you to share the infographic to help ensure that everyone affected is aware.
RAIRDA | July 12th, 2018
The Board of Trustees is most pleased to announce that our Society has become Affiliate members of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). RAIRDA is a forum established to bring together clinical and patient organisations and other key stakeholders in order to improve care for people living with rare autoimmune rheumatic diseases.
The alliance is made up of the following members and affiliate members. Members: British Society of Rheumatology, LUPAS UK, SCLERODERMA & RAYNAUD’S UK, VASCULITIS UK. Affiliate members: British Sjögren’s Syndrome Association (BSSA) and now us!
RAIRDA has three aims.
- To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
- To promote the implementation of best practice care and pathways
- To increase knowledge about patient care through better data
These chime closely with those that the BSS has striven to achieve since its formation in 1983.
So this is great news, as we move forward together to raise comprehensive awareness of Behçet’s amongst all clinicians within NHS primary, secondary and tertiary care, and promoting research into the cause, effects, treatment and management of this rare, complex and debilitating lifelong disease.
I shall be representing you all at their next meeting on 26 July 2018, and will report back thereafter.
In the meantime, more information can be found using this link: Click Here
Report Launch: Mental Health and Rare Disease | July 11th, 2018
Following a recent study into Rare Disease and Mental Health, which many of our members took part in, Rare Disease UK are pleased to announced that the findings of the project. The results have been written up into a report, which was launched in Parliament ahead of Mental Health Awareness Week.
To read more about the study and view the full report click here
BSS 2018 AGM and Conference | July 3rd, 2018
BSS AGM / Conference 2018 – Bristol
including Novotel and Holiday Inn Express (opposite the station).
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.
Can you help with a survey? | July 2nd, 2018
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
Behcet’s Family Day 2018 | July 2nd, 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.