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The Successful Story of the Cambridgeshire Sjogrens Syndrome Support Group of the BSSA                          

The Cambridgeshire Support Group of the British Sjogrens Syndrome Association is now a well established regional support group for patients suffering from Sjogrens Syndrome, their families and friends.

 

How was the group formed and how did it develop into a key regional group with over 40+ members based in Cambridgeshire and six surrounding UK counties and members located who live in mainland Europe.

 

The seed was sown back in  2013 when two patients who had been suffering in isolation from Sjogrens Syndrome had joined the BSSA and were put in touch with each other through the  BSSA’s “Make a friend Scheme” which introduces people with the condition to fellow sufferers.  Carol and Henrietta Meeting met for the first time at the unlikely named “Gog ma Gog Coffee Shop” , a name as unlikely as finding hills in the flatlands of Cambridgeshire.   Henrietta’s comments on the first get together really sums up a key role of our group.  “We realised how nice it was to be able to chat to some one else about how we felt.   So we decided to try and set up a self help group within our area and that is really the basis of our story.”

 

 

Gog ma Gog Coffee Shop

 

 

Carol Burns and Henrietta Breitmeyer both realised the real benefit of being able to talk with a fellow sufferer and the greater understanding of the problems facing Sjogrens Patients which can be developed through friendship and contact with people who fully understand each others illnesses.  Carol’s comments also highlight the groups ongoing objectives  “It was a 'light bulb moment ' for us as we had not known anyone with Sjogren's before. It was so reassuring to know we each weren't the only one and be able to discuss symptoms and management strategies. We realised there must be other sufferers in the Cambridge area and thought it would be helpful to set up a group to support each other, as being alone is so scary with Sjogren's”. 

 

The early get togethers were certainly a “Light Bulb Moment” to quote Carol, when they both decided to open up their friendship and form a local support group.

 

The Cambridgeshire Sjogrens Syndrome Support group was first brought to the attention of  the great wide world when the January 2014 Edition of the BSSA magazine which announced the formation of our group.

 

On 9th March 2014 Carol was able to inform local members that the group now had increased to a grand total of nine members.

 

By this time our group was holding its meetings at the Hub Bar of the Holiday Inn Hotel in Impington near Cambridge, not far from the Impington Village College the only major British Building designed by Walter Gropius the former principal of the then recently closed Bauhaus School (Weimar & Dessau) Our numbers increased with each meeting held at the Holiday Inn after the initial meeting with four members in attendance. 

 

 

The Hub Bar, Holiday Inn Impington, Cambridge

 

 

The group arranged it’s  first professional presentation talk in Peterborough on 7th November 2014 when Dr. Julia Hallam-Seagrave NHS Dentist in charge of NHS special care services in Cambridgeshire spoke to us about many aspects of dental care related to the specific problems of Sjogrens Syndrome Patients. Around 35 people attended this inaugural talk, some having travelled over 70 miles to attend.  Julia’s notes are available to view on this website, as are all notes from our regular programme of guest speakers presentations.

 

2015 heralded another move from the Holiday Inn to a large private Community Room offered to us by Tesco at their Bar Hill Supermarket a few miles north west of Cambridge.

The Bar Hill community room has remained our venue for group meetings ever since. The central location enables members from all areas to access our meetings.

 

September 2016 marked the launch of our Website www.sjogrenscambs.co.uk along with our direct E mail address (see Website for contact details).

 

Community Room - Tesco Store, Bar Hill, Cambridge.  Our Cambridge meeting venue since 2015

 

On 12 October 2016 the October Meeting and lecture was provided by our first Consultant Guest Speaker  Dr. Natasha Jordan, Consultant in Rheumatology and Vasculitis, at Cambridge University Hospital (Addenbrooke’s) where we were kindly offered the facility of the Cancer Research Institute made the prestigious Martin Cohen Lecture Theatre available for a big screen presentation.

 

During this same period during the Autumn of 2017 Henrietta was busy launching the Cambridge Sjogrens Support Group pages on Facebook.

 

Have a look at the Facebook site on 

https://www.facebook.com/cambridgesjogrens/?ref=ts&fref=t

 

The Group has grown from the first meeting at the Gog ma Gog Cafe involving Carol and Henrietta to a substantial and very proactive from this tiny acorn.  For members based in the North West of the County and surrounding areas Informal meetings are now held on a regular basis at the Coffee House at Dobbies Garden Centre, Hampton, Peterborough. 

 

Check out our meetings page on this website for an up to date diary of our meetings and guest speakers.

 

 

Peterborough area meetings are held at the Dobbies Garden Centre  Coffee Shop, Hampton, Peterborough.

 

We now have over 40 active members who live in Cambridgeshire and five surrounding counties.  Our Website is maintained by a member who has retired to Germany (Did a Brexodus earlier this year), who has promised to write an article comparing Sjogrens Syndrome healthcare in Germany with the NHS Sjogrens Healthcare in the UK.   Keep viewing these pages!

 

 

We are proud to have reached these notable milestones.

 

 

5 Years  since Carol and Henrietta’s first chat which led to The Cambridgeshire Support Group of the British SjogrensSyndrome Association

 

2017 is the 1st Birthday of both our Website and Facebook Page.

 

4 Years of Talks from healthcare professionals covering a wide range of Sjogrens Syndrome and associated topics.

 

We really hope this group is making a positive contribution to those who suffer from both Secondary and Primary Sjogrens Syndrome in our area.

 

May we also take this opportunity to thank everyone who has assisted over the past 5 years, Venue Hosts, Professional Speakers, Helping with Publicity and the tireless effort of our members and friends over the years.  Lastly a special thanks to all the members of staff and volunteers at the Birmingham offices of The British Sjogrens Syndrome Association, to whom we owe a massive vote of thanks for all their help, assistance and encouragement over the years.

 

Not a bad start by any means! 

 

 

 

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