What's the point of a support group?

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 and self-help groups offer members and their loved ones the chance to meet others in similar situations.  These meetings enable participants to share their concerns, worries and questions. It's also a place to exchange advice, tips and strategies for understanding and overcoming difficulties.

Sjögren's syndrome is a slowly progressing disease which can remain stable for many years, but which alters the sufferer's quality of life on a daily basis. It should be noted that a person suffering from Sjögren's syndrome does not generally experience all the symptoms of the disease (but this cannot be ruled out): dry eyes, lack of saliva, dry skin, bronchial dryness, joint and muscle pain, fatigue, etc., to name but a few.

After the shock of being diagnosed with a chronic illness, you need to acquire the skills to reorganize your life around this health problem. First and foremost, you need to understand your illness and be able to talk about it to those around you. At present, unfortunately, there is no cure. However, it is possible to alleviate symptoms and do our best to prevent possible complications.

Taking care of yourself is one of the most important things you can do after your diagnosis. One way to do this is to create a circle of friends who know what you're going through and with whom you feel comfortable sharing your fears, frustrations and joys. These encounters will not only help you feel better, they'll give you more energy and a more positive attitude, which will help you cope better with the daily challenges of living with the disease. What's more, exercise has been shown to reduce inflammation, increase muscle strength and maintain the flexibility needed for good overall health.

Run by volunteers, support and self-help groups enable people with Sjögren's syndrome to break their isolation and answer their questions about the disease, with the aim of improving their quality of life.