What is scleroderma
An introduction to this challenging condition
EULAR, the European League against Rheumatism. The Annual EULAR congress is the largest Rheumatology conference in Europe and this year sees EULAR celebrate its 70th Birthday.
This year EULAR took place in Madrid at the IFEMA congress centre from the 14th – 17th June, Over 14,300 Rheumatologists, Health Professionals and Patients from 130 different countries attended. Kim Fligelstone represented SRUK in the UK for FESCA and gave an account of the event:
The Temperature reached 43 degrees during the week and we were very grateful for the air conditioning although usually I find it too cold it was a huge relief going from outside to inside to cool off. The heat is some what dryer in Madrid than the humidity in the UK so much more comfortable than 34 degrees in London for example.
Although the congress started in the afternoon on the 14th meetings started earlier. The first was an update on ScleroID. The EULAR ScleroID score is a novel tool designed for use in clinical practice and clinical trials to display the disease impact of Systemic Sclerosis. In this preliminary analysis, Raynaud's syndrome, impaired hand function, and fatigue were the main patient reported drivers of disease impact, however, this is very early data and further recruitment and validation of this new instrument is ongoing and there will be a poster at the patient part of the 5th World Systemic Sclerosis Congress in Bordeaux from the 15th – 17th February with more up to date results.
The next meeting was an open meeting for the first study group for collaborative research where the following issues around the agenda for research were discussed:
These examples are a small snap shot of the meeting and of course nothing was absolute but certainly made the participants think about collaborative research and who to collaborate with for example regarding early diagnoses, Patients, Health Professionals, General Practitioners, Consultants and would that affect outcomes?
The first Raynaud's and Scleroderma related session was the differential diagnosis of diffuse skin sclerosis and Raynaud's with a focus on imaging, Consultant Rheumatologist John Pauling from Bath spoke of the differential diagnosis of Raynaud's and practical approaches to assessment. Interestingly scleroderma is only 1 of a broad range of sclerosising skin diseases antibodies can be identified to support a diagnoses of systemic sclerosis.
Professor Ariane Herrick Consultant Rheumatologist from Salford differentiated between Raynaud's or Primary Raynaud's and Secondary Raynaud's.
Naoaki Hashimoto from Japan also made a presentation. Later in the afternoon saw two sessions related to scleroderma at the same time which was frustrating. The main session in the larger hall was about the importance of early diagnosis and the other was about etiology and and pathogenesis, the potential benefit to the management of systemic sclerosis related interstitial lung disease from the development of two specific nuclear imaging biomarkers.
The following day Rheumatologist, Vincent Sobanski, from Lille presented his abstract in the clinical and therapeutical news in the systemic sclerosis session and Prof Ariane Herrick also presented results from the European Scleroderma Observational Study (ESOS) there will be a poster for patients at the Patient World Congress in Bordeaux on.
On the Friday there was a symposium, Systemic Sclerosis-associated interstitial lung disease (ILD): current and future perspectives, Prof Oliver Distler, Switzerland, chaired the symposium, Prof Chris Denton's talk systemic sclerosis – a journey through diagnoses and treatment, Aryeh Fischer MD USA
Can we improve the management of SSc-ILD and Annelise Rønnow, Denmark, the President of the Federation of European Scleroderma Associations (FESCA) spoke about the patient's journey. Immediately afterwards Professor Denton was the speaker for the HOT Session: Scleroderma Treatment.
Through out the congress PARE, the patient arm of EULAR has a programme of interesting sessions many sadly clashed with other SSc sessions but these were amongst the highlights of the week, Eular Campaign: Don't Delay, Connect Today, Co-morbidities: Having one RMD is enough-we don't need anything else. Bringing Rheumatology research to the next level: Addressing the main challenges of patient partnerships in research and health care service design.. Barrier free employment for young people with RMD's. Difficult to reach patient groups. Suffering in silence. Optimizing the management of psychological well-being for people with RMDs. Strengthening your organisation – how to manage volunteers. The best quote from this session was from Clare Jacklin, director of external affairs for the National Rheumatoid Arthritis Society (NRAS) “Volunteers are not not paid because they are worthless but because they are priceless”
This years Stene Prize was won by Stefanie Hulst of the Netherlands for her fantastic award winning essay. To read about the Stene Prize and download booklets or read past winning essays, each essay is unique in its own way and you will find entry's from people with scleroderma who made it into the top 10.
The 2018 Stene prize topic is “My personal champion-supporting my everyday life with a rheumatic and musculoskeletal diseas (RMD)” further information and Rules can be found on the above link. Remember you must send your entry to you National PARE organisation. Good luck.
EULAR also launched its School of Rheumatology visit www.eular.org for more information on how to join.
So no magic cures for scleroderma but there are so many of the medical profession and scientists working away on our behalf that it felt good to see at first hand how collaborative research in scleroderma is ongoing. I have not mentioned all the sessions some of which were very scientific such as Macrophage M2 polarization: implications in fibrotizing diseases where Bob Lafyatis from the USA and Jamie King from the UK were presenting. Indeed to many to mention but hope you get the picture.
FESCA was represented by Alexandra Portales Guiraud from Spain, Annelise Rønnow from Denmark, Edith Brown and Kim Fligelstone from the UK.