It’s all in the name – Behçet’s UK

On 19th October 2018 the board of trustees formally voted in favour of renaming Behçet’s Syndrome Society to Behçet’s UK.

Why change the name?

The prime goals of the society are to support our members, reduce the time to diagnosis for patients and promote research into Behçet’s. This will be achieved by raising awareness of Behçet’s to the wider public, including medical professionals.

When the society was formed in 1983 the term syndrome was widely used, there has since been much debate among medical professionals whether Behçet’s is a disease or a syndrome with many now favouring term disease. Renaming to Behçet’s UK allows us to step away from this ongoing debate.

Although we welcome members outside the UK our constitution states that we exist for the benefit of all members in the UK. As Tony stated in our autumn newsletter Behçet’s UK sends a clear message that this what we are here for.

To quote the famous advertising slogan Behçet’s UK now “does exactly what it says on the tin” it helps us achieve our prime goals, here in the UK, exactly as Judith Buckle intended when the society was formed.

Where are you in the rename process?

We are now registered with the Charities Commission as Behçet’s UK and we are completing the process of formally notifying organisations of our name change.

We have started the process of updating to Behcet’s UK on social media, so please bear with us if you see both names for a while, but we are waiting for our new logo to complete our rebrand.

Why call it a rebrand?

These days every charity has to take a leaf out of the book of large corporations to promote themselves. These corporations obviously didn’t start large, they started with a product or service and with that their personality aka their brand grew.

For Behçet’s UK rebranding isn’t about change it’s about building on what we have been doing and producing a consistent professional image which is familiar and memorable which will in turn lead to increased trust and support.

As a small charity the luxury of brand consultants are beyond our financial grasp however we can still apply the same principles and therefore the board of trustees have instructed an independent graphic design company to produce some logo designs which will allow us to develop our brand.

When will we see the new brand?

Once our new brand has been agreed by the board we will start a soft rollout of across our social media platforms and communication methods. To keep costs down we have already reduced stocks of printed materials and merchandise so we will roll out the new brand as stocks are used up.

For current Behcet’s UK members keep your eyes peeled for our Spring 2019 Newsletter!

How will you spread the word? Will it lead to confusion?

“Formerly Behçet’s Syndrome Society” will be prevalent on all social media, literature and communication methods for the foreseeable future. We will also reroute existing URLs and email addresses as long as necessary.

 

If you have any further questions, please don’t hesitate to get in touch via info@behcetsdisease.org.uk or telephone 0345 130 7328

Gemma Darlow
Administrator

January 8th, 2019

2018 AGM and Conference report

A full report of the 2018 AGM and Conference in Bristol is now available: 2018 AGM and Conference report.

January 7th, 2019

Christmas Cards – SOLD OUT!

Our BSS Christmas cards have now sold out and in record time this year! Thank you so much to those who bought them.

November 16th, 2018

BSS Annual Report and Accounts 2018

ON SALE NOW – BSS Christmas Cards

Our fabulous Christmas Cards hand made by Jan Mather and her Mum are on sale now.  Click here to find out how to place your order

October 15th, 2018

Donate to us when you sell on eBay!

It’s not often that a really good ‘win-win’ deal comes along, which benefits everyone and effectively costs you nothing.

We are very pleased to announce (as long time eBayers and supporters of the BSS) that after a lot of effort by Julie Collier and others to jump through the many necessary hoops, the BSS has now been set up as a charity on eBay.

It is totally up to you how much of an auction you wish to donate to the charity, but the really brilliant twist is that even if you donate as little as 10% of your auction outcome to the BSS, eBay will refund your selling fees. For many auctions, this will mean that sellers’ fees normally payable to eBay effectively go straight to the BSS, so it costs practically nothing to you, and benefits to the charity are huge – all those small, but frankly annoying, £1.50 eBay fees you would have to pay anyway will soon add up for the benefit of Behçet’s disease patients.

All you have to do is remember to click the “Charity Auction” option and pick the BSS from the list.

So, if you are a keen eBayer, or only use it once in a while, why pay eBay when your fees, maybe plus a little extra, could go straight to the BSS? Happy eBaying everyone, and tell your friends. We have to smile every time we list something now… no fees to eBay, just a donation to the BSS!

(Text by Peter and Louise May)

July 25th, 2018

Drug Recall – What should you do?

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.

July 19th, 2018

RAIRDA

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, British Sjögren’s Syndrome Association (BSSA). Affiliate members: Behçet’s UK

RAIRDA has three aims.

  1. To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
  2. To promote the implementation of best practice care and pathways
  3. 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

Tony Thornburn

Chair

July 12th, 2018

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

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