The Men’s Room at the World Scleroderma Congress

In scleroderma the majority of patients are women, so that it looks as if there is less attention to men in daily functioning. Generally there is an agreement that men and women are different and this can generate the question ‘Does anxiety/depression manifest itself in men as often as in women with scleroderma?

When it comes to the occurrence of these feelings, there is generally no difference between men and women. However, there may be a difference in the way they express them and cope with them. Influenced by education and other social and cultural factors, it seems that women are still more at ease, than men, to express emotions that indicate “vulnerability”. Although differences in this respect may have become smaller in the past decades, they still persist. Scientific literature does not give a clear answer to this question.

Only a couple of studies focusing on depression/anxiety in people with scleroderma exist. In one of them, women reported more depression but in another there were no sex differences for depression, only anxiety was reported as more present in women.

A men-only group encourages male patients to speak about different scleroderma-related issues happening in their lives. It can be easier to talk about daily life matters in a group that experience the same difficulties, frustrations and worries. Being in a group of same-sex participants can give a safer feeling of understanding and support, as well as enhancing participation and openness.

This approach was used in Rome at the Systemic Sclerosis World Congress, where a small group of men joined to share their stories, daily difficulties, and the solutions they sometimes found to work for them. Topics we discussed were very diverse and it helped us see things differently.

A men-only session will be planned for the next 4th Systemic Sclerosis World Congress in Lisbon and I hope to see a large group of participants willing to share their experience so we (men) can all learn from these experiences and allow all participants to benefit from them. Finally, from my experience and from the feedback I got from other participants, sharing in a men’s session helped us feel supported, understood and not alone.

We will be waiting for you.

Joep Welling
Member of FESCA aisbl board

For more information on the next Systemic Sclerosis World Congress in Lisbon – please go here. 

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Mini newsletter from Fesca

Our latest newsletter, which is a mini newsletter on recent events involving Fesca is ready. Another newsletter on our members activities for this year’s World Scleroderma Day is on its way.

For download of newsletter : 2015 September – mini newsletter

 

PRESS RELEASE – FESCA holds event in EU Parliament, June 2015

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To celebrate World Scleroderma Day 2015, the Federation of European Scleroderma Associations (FESCA aisbl.) held the European Parliamentary event “Unveiling Scleroderma: Hidden Truth” on June 30 in Brussels. All MEPs were invited to this EU Parliament meeting to listen as the invited experts spoke about the quality of care available for scleroderma patients across Europe.

Hosted by James Carver MEP, who lost his wife to scleroderma in 2009, the event provided a unique forum for patients, physicians, and politicians to share their stories and understanding.

Key medical professionals from across Europe highlighted the importance of early diagnosis, sufficient investment in research and specialist centres, and equity of care. The presentations on these topics included insightful talks from Professor Denton (UK), Professor Distler (Switzerland), Dr. Posada De la Paz (Spain) and Professor Van den Hoogen (Netherlands). These key rheumatologists spoke of how although the effects of scleroderma can be devastating, proper treatment and management will enable people with scleroderma can lead full and rewarding lives.

The MEPs attending were also privileged to hear from a number of patients themselves, from Denmark, the Netherlands, Hungary and the UK, who shared with the audience inspiring stories of their difficult journeys with scleroderma. EULAR representative Nele Caeyers spoke of the support that is given to FESCA by the EU’s major rheumatology organisation.

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World Scleroderma Day 2015 was developed by FESCA to raise awareness of the 2.5 million people currently diagnosed worldwide who live with this rare and under-recognised disease. Its success is due to the commitment of all the national patient support and advocacy groups who form part of the umbrella organisation.

Ann Tyrrell Kennedy, President of FESCA, said “World Scleroderma Day was a huge success and it has been encouraging to see awareness of scleroderma gaining momentum across Europe. It’s so important that we make the journey to a diagnosis as short as possible, and having the support of politicians and physicians alongside patient groups is a really important step to improving millions of lives across the world.”

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For more information please contact www.fesca-scleroderma.eu

Watch the event on Youtube

 

 

Interview on World Scleroderma Day 2015

Watch a specially recorded message for World Scleroderma Day 2015 by Ms. Ramona Kanters, founder of the patient support group in the Netherlands, and learn about the everyday impact of Scleroderma.

The interview is recorded by Actelion and published on their Youtube channel.

Unveiling Scleroderma

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This World Scleroderma Day 2015 we will be “unveiling Scleroderma”.

Organisations across the globe are taking part in the campaign to raise awareness for 2.5 million individuals diagnosed with scleroderma worldwide.

25 seconds for 2.5 million

You can help us raise awareness by recording a 25-second video about your experience of scleroderma and sharing with your social networks. Use the hashtags to view your video on the main WSD website. #WSD15 #unveilscleroderma #scleroderma #worldsclerodermaday

Help us create change

On the 30th June FESCA aisbl will be unveiling scleroderma at European Parliament, Brussels. This event aims to raise awareness amongst MEPs, policy makers and stakeholders to tackle inequity of care and ensure every scleroderma patient in Europe has access to quality care.

Support this event by signing the pledge on the World Scleroderma Day website.

worldsclerodermaday.org

Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his scleroderma, as this painting chosen as icon for the first World Scleroderma Day demonstrates.

He died June 29, 1940.

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Download the poster for destribution: World Scleroderma Day 2015 Poster

Actemra Looks Promising in Scleroderma

Encouraging results were seen for tocilizumab (Actemra) in the treatment of diffuse systemic sclerosis (SSc) in a proof-of-concept study by Christopher P. Denton, MBBS, of University College Londo.

At 24 weeks, a numerically favorable response was seen on modified Rodnan skin scores and lung fibrosis among patients randomized to tocilizumab compared with those receiving placebo. The study is now continuing with a phase III trial that includes a greater number of patients.

 

Read the entire article at MedpageToday.com>>

 

Scleroderma Healthcare Report

Sclerodermie Advies & Voorlichting (Scleroderma Recommendation & Information – SAV) initiated the Scleroderma Healthcare study in 2013.

The principal reason was that the owner of SAV, Ramona Kanters, suffers from this disease and has made it her life objective to improve healthcare and quality of life in scleroderma. In this setting up to 200 patients were interviewed and the team administered a questionnaire.

The questionnaires were analyzed for 65 of these patients, 59 female and 6 male.

Read the whole report by Ramona Kanters and Mieke Rovers.
PDF: Scleroderma Healthcare Report 

For more information, please visit the Sclerodermie Advies & Voorlichting website.

2014 Fesca Newsletter

Please find below the latest FESCA newsletter with all sorts of stories from around Europe and some other interesting articles.

In this newsletter we bring you an update on how World Scleroderma Day 2014 was held in many European counties, wake-up call to us all, the DeSScipher project and much more.

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2014 Fesca newsletter

Please click here for more newsletters.

A gender gap in primary and secondary heart dysfunctions in systemic sclerosis: a EUSTAR prospective study

The diagnostic rate of systemic sclerosis demonstrates a strong gender bias. EUSTAR performed recently a prospective observational study using the latest 2013 data extract from the EULAR scleroderma trials and research (EUSTAR) cohort.

The study concluded that although more common in women, systemic sclerosis appears as strikingly more severe in men.

Read the abstract here.

Inventiva receives positive opinion on orphan drug designation in the European Union for IVA337 – a treatment for Systemic Sclerosis (SSc)

With few approved drugs available in SSc, this approach could significantly improve the treatment options in the future.

Dijon, France, November 3, 2014 – Inventiva, a drug discovery company that focuses on therapeutic approaches involving transcription factors and epigenetic targets, today announces that the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMA) has given a positive opinion on the designation of IVA337 as an orphan medicinal product.

IVA337 is Inventiva’s lead clinical candidate for the treatment of Systemic Sclerosis (SSc).

This positive COMP opinion is a key milestone in our clinical development plan for IVA337,” said Pierre Broqua, chief scientific officer and co-founder of Inventiva. “Our clinical candidate acts on several components of fibrosis to deliver a unique therapeutic approach to SSc patients.”

“This favorable opinion reflects the quality of Inventiva’s drug discovery programs and strong capabilities in fibrosis research,” said Jean-Louis Junien, Inventiva’s science advisor. “We are looking forward to entering into a phase 2a proof of concept clinical trial in 2015.”

“IVA337 has strong potential for becoming a breakthrough therapeutic option for SSc patients,” said Professor Yannick Allanore, professor of rheumatology, University Paris Descartes and INSERM U1016, who is collaborating with Inventiva on this exciting project.

IVA337 is a patent protected NCE (New Chemical Entity) that has previously demonstrated good tolerability, safety and efficacy in phase 1 and 2 studies in an unrelated indication. IVA337 has been investigated in several preclinical models of fibrotic disorders and reverses established skin fibrosis in curative settings.

 

Read more

www.inventivapharma.com

https://fr.linkedin.com/company/inventiva-pharma

View the original release