In reality, Sjögren’s syndrome is very poorly known to the medical world and difficult to diagnose. For this reason, the Association was created to answer questions, provide information about the syndrome, allow people with the disease and their loved ones to meet and share coping strategies.
Research has shown that people receiving support from a social network do better and feel more in control than those who are isolated. People who have been diagnosed with Sjögren’s Syndrome must learn to live with a chronic illness with the additional challenge of having a rare disease that most people have never heard of. Because of the rarity of the disease, it is sometimes difficult to find people who understand the pitfalls that a person with Sjögren’s syndrome encounters on a daily basis.
Want to know more about Sjogren’s syndrome? Do you feel isolated? Join the support and support groups of the Association: in addition to a warm welcome, we offer meetings with relevant content. Do not hesitate to contact us.
Conduct of the meeting
The meeting begins with a tour de table so that each person can express himself / herself if he / she wishes. The proposed theme can affect as much the diagnosis, the limitations that the syndrome causes, its impacts on the quality of life, the treatments, the medical follow-up, the daily adaptation with a problem of health which one did not expect and which makes us experience the jagged emotions, pain and fatigue management that social aspects often bring with Sjögren’s syndrome.
For more details, you can join a Sjögren Syndrome Association volunteer who will be happy to inform you:
The importance of support
Support groups offer members and their families a chance to meet people who are in a similar situation. These meetings allow participants to share their concerns and questions. It is also a place, where tips and strategies are exchanged to understand and overcome the difficulties encountered.
Sjogren’s syndrome evolves slowly and can remain stable for many years, but it changes the quality of life of the person. It should be noted that a person with Sjögren does not usually have all the symptoms of the disease (but this is not excluded): dry eyes, lack of saliva, dry skin, joint and muscle pain, fatigue, etc., to name a few.
After the shock following the announcement of the chronic disease, it is necessary to acquire skills to reorganize one’s life with this health problem. It is first of all to understand one’s illness and to manage to talk about it to one’s entourage. At present, unfortunately there is no cure. However, it is possible to relieve symptoms and to try to prevent possible complications.
Taking care of yourself is one of the most important things to do following the announcement of the diagnosis.To do this, you can at a self-help group who know what you are going through and with whom you feel comfortable sharing your fears, frustrations and joys. These meetings will not only help you feel better, but will also give you more energy and a more positive attitude that will help you cope with the daily challenges with the disease. In addition, exercise has been shown to reduce inflammation, increase muscle strength, and maintain the flexibility to maintain good health.
People of heart
Volunteers help people with Sjogren’s Syndrome break their isolation, answer questions about the illness and improve their quality of life.
You are warmly invited to all our activities.