Support Groups for People with Sjogren’s Syndrome

Support Groups for People with Sjogren’s Syndrome

Sjogren’s syndrome is a rare, autoimmune disease that affects glands that produce secretions such as tears and saliva. This results in symptoms such as dry eyes, dry throat, dry skin, and dryness in other organs, which can result in pain, fatigue, and digestive problems that greatly affect quality of life.

It can take up to seven years to confirm a diagnosis for Sjogren’s syndrome. The disease also occurs in primary (without any other autoimmune disease) and secondary (accompanying another autoimmune disease) forms, making it more difficult to understand and identify.

Support and advocacy groups can be great resources for Sjogren’s patients and caregivers.

Seek support resources for Sjogren’s syndrome

Although Sjogren’s syndrome is a very rare disease, support for patients and caregivers is available. The Sjogren’s Syndrome Foundation offers education and resources about dealing with the disease. The foundation also offers access to support groups within the U.S. and Canada and runs the International Sjogren’s Network, which collects information about support groups from across the world, including the British Sjogren’s Syndrome Association.

Register with these support groups to receive timely mailings about new developments about disease therapy, notices about meetings, and access to a helpline facility.

Hospitals that treat Sjogren’s syndrome often form their own small support groups, which also can be a useful resource.

Group meetings and bulletin boards

Many Sjogren’s syndrome support groups regularly host meetings that bring together researchers, clinicians, and patients. These meetings offer the opportunity to network with others to discuss ways of increasing awareness about the disease and exchanging knowledge and concerns.

Another way of maintaining a healthy social interaction with Sjogren’s support groups is via online bulletin boards or forums. Many support group websites offer online discussion spaces where you can post a personal experience or ask questions. You also can reach out to these groups on social media platforms such as Facebook and Twitter.

Develop community-driven support groups

Another way to increase social awareness and community participation is to volunteer to form your own support group within your community or region. Such support groups also may be supported by the Sjogren’s Syndrome Foundation, which enables access to a larger repository of resources.

Subscribe to this website

Our website, Sjogren’s Syndrome News, helps you stay abreast of all developments in Sjogren’s syndrome research and upcoming clinical trials for which you may be eligible to participate. It also offers topical tips and insights to help you better cope with the disease.

 

Last updated: Jan. 6, 2020

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Sjogren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.