I attended the 5th Systemic Sclerosis World Congress

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On the 16th February 2018, I found myself on the steps of the entrance of the Bordeaux Congress Centre. Set in the Quartier du Lac, or the Lake District, the modern venue spans an impressive 12,000 square metres, contains a range of exhibition and meeting rooms as well as several large amphitheatres, and over the 15-17 February 2018 was the home of the 5th Systemic Sclerosis World Congress.

The congress was an opportunity for doctors, healthcare professionals and patients to gather, share and present new medical findings, research and results. Alongside the question and answer panels, patient talks and presentations in the large amphitheatres, there were also smaller workshops and focus groups taking place in the seminar rooms upstairs. There was also the chance for patients to participate in physical classes such as posture and breathing exercises and yoga.

Whilst I had previous knowledge of systemic sclerosis, also known as scleroderma, and have attended several fundraising events in aid of those affected by the condition in the past, I was keen to learn more about the disease. I attended the congress to support a member of my family who was invited to speak as a patient representative at the event.

On arrival we were warmly welcomed into the brightly lit and spaciously designed building and received our patient passes in order to gain access to the event. The lobby of the Congress Centre was abuzz with friendly chatter and conversation as there were several stalls and information stands set up to provide a space for introductions and networking. There were also information leaflets and samples of products created to help those with systemic sclerosis on offer.

After browsing the main lobby area, we attended a SPIN focus group with the aim of identifying and facilitating barriers to physical activity in scleroderma. It was a small group session lasting around an hour with patients from all over the world in attendance. The seminar revolved around conducting specialised research in aid of creating new solutions for patient problems. It was great to be able to see that genuine patient concerns were being addressed directly and personally. The focus group allowed patients to share their own experiences and offer support and advice to each other.

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During the rest of my time at the 5th Systemic Sclerosis World Congress, I attended several other talks by healthcare professionals discussing the treatment of pain, regarding nutrition for those with scleroderma and also a talk by a professor sharing research on kidney failure. These talks were available for translation into French and Spanish and were followed by the option for audience members to ask questions. The presentations were well planned and ran smoothly, allowing for listeners to come in and choose which talks they wished to listen to, or to exit and attend another seminar or activity.

The congress was a brilliant example of how important sharing information and experiences can benefit others, as well as being a big advancement in improving the priorities of systemic sclerosis research. Over the few days that I attended, there were abundant opportunities for patients and doctors to interact and lots of discussion of medical research carried out to help improve patient care. The smaller group sessions and larger medical talks provided a wealth of support and advice from doctors in order to improve the quality of life for scleroderma patients.

The 5th Systemic Sclerosis World Congress was a huge success with doctors and patients attending from all around the world. Over 1,200 people attended from 56 countries, including France, Belgium, China, UK, USA and Canada. The organisation behind the hugely successful event was FESCA, the Federation of European Scleroderma Associations. FESCA managed everything in association with the patient congress, for example, organising the programme, inviting the speakers and helping to arrange their accommodation, accommodating patients and doctors from other European countries by providing translation services and also supplying the event with refreshments.

The patient congress was brought to a jovial end by an Australian duo, a systemic sclerosis patient and her husband, providing musical entertainment to bring closure to the proceedings. The unexpected singalong created a cheerful atmosphere and worked to unite the crowd in song. Whilst I do not have systemic sclerosis, I found the congress very interesting and am grateful for the opportunity to be able to learn more about the disease. It was an enlightening experience and I look forward to the next World Congress in 2020, which will take place in Prague.

– a niece to 1 of the patient participants

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