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)
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