History of the BSS
Behçet’s (pronounced Betjets) syndrome (also known as Behçet’s disease) is a chronic condition caused by disturbances in the body’s immune system. It is named after Hulushi Behçet (1889-1948), a Turkish dermatologist and scientist, who first recognised the syndrome in one of his patients in 1924. Although Behçet’s disease can affect people of any age, it most commonly affects those between the ages of 20 and 40. Common symptoms include mouth ulcers, genital ulcers, eye inflammation and arthritis.
Judy Buckle, a nurse and Behçet’s disease patient, was the founder of the Behçet’s Syndrome Society in1983/4.
The Society arose from a few friends and Judy’s GP deciding to raise money for an electric wheelchair. The original members were Frank Whiteside, Bill Burn, Paul Woodrow and David Robson. The efforts of this group came to the attention of the Norman Collinson Trust, a local York charity, who met Judy and gave her the wheelchair. They also heard her wish to establish a national charity for people with Behçet’s disease, and so provided £150 towards administration costs to allow the Society to be formed.
The Society, initially, was based in York and driven by the determination of Judy who organised countless events to raise funds.
Judy passed away in June 1997 and wanted a celebration of her life at her funeral, to show what had been achieved. By continuing the Society and recognising how much Judy gave of herself, despite her disability, we continue to celebrate.
Between 1984 when the trust was incorporated and accepted by the Charity Commission and 1998, the charity expanded very slowly gaining members and becoming recognised by Behçet’s disease consultants as an organisation that represented the views of its member patients.
1998 to 2003 were defining years as the membership numbers slowly increased enabling the Society to claim to be the voice of Behçet’s disease patients in the UK. This culminated in a presentation to the Behçet’s Forum which is a meeting of Behçet’s disease consultants and scientific advisors and is considered to be one of the influential groups in Behçet’s disease research in the world.
Between 2004 to 2006 the Society, having raised sufficient reserves, decided to spend them and to engage various consultants to advise on the expansion of the organisation. This lead to applications to trusts and organisations able to help the growth and resulted in a new more dynamic website and the decision to appoint a full time director to oversee the expansion of the Society. In 2007, the interview process and recruitment of a Director was started.
The new Director started on 1 January 2008, and a business plan was completed in June. New literature and PR packages were produced, and the membership database was upgraded to reflect accurate membership figures. More PR and fundraising was encouraged from the members, and a new trustee committee structure was put in place. A pro bono solicitor helped to update the constitution to reflect current Charity Commission guidelines. The decision to make a bid for National Specialist Commissioning was made in October 2008, after much research and discussion with other patient groups.