What is systemic sclerosis?

We are proud to announce that with support from 2 patients – one in Italy and one in Denmark – Boehringer-Ingelheim has developed an illustrated infographic (like a cartoon) on systemic sclerosis.

Infographic of Systemic Sclerosis, by Boehringer-Ingelheim

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Scleroderma Support Group Survey

Do you have scleroderma? Are you interested in helping advance research on
scleroderma support groups? If so, please lend a hand by completing this short 10-15
minute survey!

Our team, which is comprised of international researchers; people with scleroderma; and
leaders from the Federation of European Scleroderma Associations, the Scleroderma
Foundation of the United States, and the Scleroderma Society of Canada are working
together to learn more about the experiences of scleroderma support group facilitators,
scleroderma support group members, and people who choose not to attend scleroderma
support groups.

Your anonymous answers to the survey questions will provide a greater understanding of
the important training and support needs of group leaders, as well as the reasons why
people with scleroderma either attend or do not attend support groups. The results from
this survey will be used to increase the accessibility of scleroderma support groups and to
structure these groups in a way that increases their ability to effectively meet the needs of
members.

If you have a few minutes to spare and are able to help with this exciting research project,
please click on the following link, which will take you directly to the survey:

https://survey.co1.qualtrics.com/SE/?SID=SV_cAdjVJSxLa0PHdH

If you have any additional questions or concerns about the survey, please contact any
member of our research team listed below:

MS. STEPHANIE GUMUCHIAN
MSc. Psychiatry Student, McGill University
Telephone: (514) 340-8222 ext. 6813; Email: sgumuchian@gmail.com

OR

MS. VANESSA DELISLE
PhD. Counselling Psychology Student, McGill University
Telephone: (514) 340-8222 ext. 6812; Email: vanessa.delisle@mail.mcgill.ca

OR

MS. MIA PEPIN
BSc. Psychology Student, Université de Montréal
Telephone: (514) 340-8222 ext. 8578; Email: mia.r.pepin@gmail.com

FASST – A trial targeting fibrosis in the skin

The FASST (For A Systemic Sclerosis Trial) trial is a phase 2 clinical trial sponsored by Inventiva Pharma. The purpose of this study is to evaluate the effectiveness and safety of IVA337 for the treatment of Diffuse Cutaneous Systemic Sclerosis.

IVA337 is a new drug with anti-fibrotic properties meaning that it might be able to act on several components of the fibrotic process and on several organs.

The primary objective of this study is to evaluate in patients suffering from diffuse cutaneous SSc (DcSSc) the effect of 800mg and 1200mg IVA337 daily on the skin compared to placebo. The modified Rodnan Skin Score (mRSS) will be used to determine the changes in skin.

In the video below developed by Inventiva Pharma, Prof. Yannick Allanore, explains mRSS. For other languages,  please visit the trial’s website.

 

The trial is randomized, double-blind, placebo-controlled, multicentre proof-of-concept trial of IVA337 in the treatment of diffuse cutaneous systemic sclerosis.

Go to www.fassttrial.com for further information.

Read latest newsletter. [PDF]

Videos from 4th Systemic Sclerosis World Congress

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More than 300 patients participated the patient’s congress at 4th Systemic Sclerosis World Congress in Lisbon, February 18-20, 2016.

We had joint sessions and experts were ready to answer questions such as:

  • What are the options in treating SSc?
  • Is the heart involved?
  • Why is breathing so difficult?
  • What can I do to help my digestion problems?
  • What can be done about the pain in my feet?
  • Should I consider a transplant?
  • Can I try to get pregnant safely?
  • What new therapies are available now?
  • What are researchers and FESCA doing for us?
  • How can I cope with my fatigue?
  • Can I get help as a man with SSc?
  • How can my family and I deal with depression?
  • How can children with SSc learn to cope?

The patient congress also included interactive exercise and breathing sessions, plus a round-table networking meeting for leaders of patient groups the afternoon before the congress, and plenty of networking opportunities during it.

Many patients were present for the first time and some of the reactions were:

“The meeting with other scleroderma patients from other countries of the world was very impressive, and you found new friends. Even though I have lived with this disease for more than 30 years, I learned many new things from other patients”

“It was SO amazing. Kindness and care was everywhere, and it was a pleasure to hear the lectures from such enthusiastic doctors and brave patients telling their own experiences living with this disease. I learned so much about scleroderma and how to cope with the disease without loosing ME!”

Recordings from the 4th Systemic Sclerosis World Congress

The sessions in the auditorium were recorded, and we are happy to share those with you.  We are in process of converting the videos with the translated audio – French, Spanish and Portuguese. When they are ready, you will find them here, too.

Friday 19 Feb

9.00-9.10 FESCA welcome. A. Kennedy (Ireland)

9.10 – 9.30 Opening Lecture: What do we know about scleroderma now? / Prof C. Denton (UK)

9.30 – 10.30 What will help my digestive problems?

  • Understanding the GI tract  Prof. J. Clarke (USA)
  • Nutrition in SSc  A. Cardoso (Portugal)
  • Learning to Cope with Gut Problems  A. Vegh (Hungary)
  • My Journey I. Galetti (Italy)

Chairs: A. Kennedy (IE), C. Denton (UK)

 

10.30 -11.00    Coffee Break

11.00-12.00   What will Help me Breathe Easily? Is my Heart Involved?

  • Understanding lung problems  Prof. O. Distler (CH)
  • PAH and the Heart  Dr. A. Cordeiro (Portugal), Dr. M.J. Loureiro (Portugal)
  • Struggles with Breathing  A. Roennow (Denmark)

Chairs: A. Portales (SP), Dr. A. Herrick (UK)

 

12.00-13.00      Can I improve my sexual relations, or get pregnant safely?

  • Improving Sexuality  Prof. A. Tincani (IT)
  • Is it Safe to get Pregnant?  Prof. V. Steen (USA) 
  • My New Baby  C. Leite (Portugal)
  • Developing Sexual Confidence  G. Verzi (IT)
  • Enjoying your Relationship  R. Kanters (NL)

Chairs: A. Kennedy (IE), Dr. G. Riemekasten (D)

13.00-14.00      Lunch

14.00-14.40    What will Cure the Pain of Digital Ulcers & Calcinosis? 

  • Our Recommendations for Treatment of Ulcers   Prof. M. Matucci-Cerinic (I)
  • How we Care for Ulcers in a Portuguese Clinic  Prof. J. Delgado Alves (Portugal)
  • Pain: The Greatest Struggle for Many Patients  Y. Courcoux (F)

Chairs: D. Charalambous (Cy), E. Mateus (Portugal)

14.40-15.15      How do I Cope with my Facial Changes?

  • Changing Faces and Self-Esteem  Prof. A. Tyndall (CH)
  • Readjusting my Life  M. Sauvé (CAN)
  • My Story   S. Sandulescu (Romania)

Chairs: B. Garay-Toth (Hungary), Prof. P. Carriera (SP)

 

15.15-16.30         How Can I Manage SSc Myself?

  • Five Ways to Manage your Symptoms  Dr. L. Kwakkenbos (NL)
  • Do Support Groups Help? V. Delisle (CAN)
  • Painful Symptoms that Cannot be Measured  Dr. Jason Lee (CAN)
  • Mind & Body Strength Dr. L.A. Saketkoo (USA)

Chairs: N. Paciotti (CH), A. Kennedy (IE)

 

Saturday 20 Feb

9.00-10.00        “Meet the Professor”: Answers to your questions in your own language

in English, Room 3A    Prof. Maureen Mayes (USA) & Prof. Patricia Carriera (SP)  (translation into Portuguese, French, Spanish), Chair: A. Portales (SP)

in German, Room 3C   Prof. U. Müller-Ladner (D), Chair: G. Niehaus (D)

in Italian, Room 3B     Prof. M. Matucci-Cerinic (I), Chair: G. Tassini (I)

10.00-11.00      What is Research doing for Me? What New Therapies can I try?

  • The Hope of Systemic Drugs  Prof. C. Denton (UK)
  • Considering Stem-Cell Transplants  Prof. J. Van Laar (NL)
  • My Lung Transplant  A. Martin (CH)
  • My Stem-Cell Transplant  R. Kanters (NL)

Chairs: J. Welling (NL), Prof. A. Tyndall (CH)

11.00-11.30      coffee break

11.30-12.00         After 10 years with SSc, What Can I Expect? 

  • Predicting the Future with SSc   Dr. Jason Lee (CAN)
  • A Long Life With SSc  K. Fligelstone (UK)

Chair: A. Roennow (Denmark)

12.00-13.00      Coping: How can my family and I manage SSc better?

  • Dealing with Chronic Fatigue  Dr. J. Poole (USA)
  • Breathing Exercises Dr. J.Poole (USA)
  • How to share SSc with a loved one  H. and I. Lever (Sweden)
  • Finding your way as a single mother: M. Gaafar (CH)
  • A Meditation for stress relief: Dr. L. A. Saketkoo (USA)

Chair: A. Kennedy (IE)

 

13.00  CLOSURE OF CONGRESS

 

 

The Desscipher project is closing to it’s end

Since the start the latest recruitment (1st April 2013 till 21st July 2015) of the five observational trials is: nearly 2089 patients with systemic sclerosis have been screened and 1862 patients have been enrolled into the trials for primary analysis.

Thus, with the help of FESCA and other contributing centers the DeSScipher project had become the largest prospective observational research project ever on systemic sclerosis!

The main contributing EUSTAR centres are from Italy, Switzerland, UK. Hungary, France, Spain, Croatia, Germany, Russia, Romania, Turkey, Egypt.

Please find the detailed patient recruitment numbers for all OT (observational trial) and the center below.

Number of patients enrolled into the observational arms of all OTs

desscipher_patientsenrolled
desscipher_recruitmentprocess

What is the DeSScipher project?

DeSScipher is the 1st international EC-funded research project, and currently also the largest project, on the rare disease systemic sclerosis (SSc). DeSScipher aims to decipher the optimal management of systemic sclerosis. The goals of this project are to improve the treatment strategies for people with systemic sclerosis, and thus to help affected patients to get more quality of life. The projects comprises five observational, non-interventional studies which started in April 2013 and have been designed to cover different evolution phases of the disease from early, functionally relevant manifestations such as digital ulcers and hand arthritis to later, more severe organ manifestations such as interstitial lung disease, pulmonary hypertension and severe heart disease. Moreover, DeSScipher aims to improve the education of people with systemic sclerosis and physicians, and ultimately to achieve a better care for patients by the development of accepted evidence-based clinical guidelines.

The activities of FESCA within the DeSScipher project

FESCA aisbl. is a full partner of the DeSScipher project and deeply involved since the very beginning of the five observational trials. The main task of FESCA is to actively disseminate the research project in Europe and in its member countries. To introduce the project the main launch activities were in 2013 but some member countries joined to communicate the project in 2014. FESCA supported the project through its World Scleroderma Day in 2013, 2014 and 2015. In this year DeSScipher was highlighted in the EU Pariament Event in Brusseles where WSD was celebrated.

Next steps

The project will come to  the end in 30th November 2015.

The closer event of this huge project is the Dissemination Meeting of Project DeSScipher in Bad Nauheim in Germany from 27-29th November. All the participants of the project, the representatives and physicians of the involved clinics, representatives of FESCA are invited to the event. In this meeting a detailed report about the results of the separate OTs (Observational Trials) will be introduced.

After the results are ready to distribute FESCA task will be to help disseminate the outcome among our member countries in 2016.

Thank you for the contribution of our member associations to help achieving this great number of participation to make this project successful.

 

Beata Garay Toth
Vice-president, FESCA
DeSScipher representative

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