Sjögren’s Patients Encouraged to Participate, Educate During Awareness Month

Sjögren’s Patients Encouraged to Participate, Educate During Awareness Month

With April designated as Sjögren’s Awareness Month, the Sjögren’s Syndrome Foundation hopes patients will be a part of the movement and help educate loved ones and others about the disease.

The Sjögren’s Syndrome Foundation works to educate people about this debilitating disease and how it affects the lives of those who live with it. This month, the foundation is revealing the stories of 30 patients to help raise awareness of Sjögren’s.

Sjögren’s syndrome is a systemic autoimmune disease that affects the entire body. Symptoms include extensive dryness, fatigue, chronic pain, and in more serious cases it can lead to major organ damage, neuropathies, and lymphomas.

Throughout April, the Sjögren’s Syndrome Foundation will post a word a day on social media that reflects the realities of Sjögren’s and to help raise awareness and education for this rare disease.

The initiative is part of the 2018 campaign, “30 Faces for Sjögren’s Awareness Month.”

The foundation estimates that as many as four million Americans are living with Sjögren’s. The disease affects both men and women of different ages and ethnicities and is one of the most prevalent, though lesser known, autoimmune diseases.

Sjögren’s also affects each patient differently, which often leads to a misunderstanding about the seriousness of the disease and can make patients feel very isolated.

During Sjögren’s Awareness Month, the foundation wants to help patients feel part of a community through social media and encourage everyone to use the #ThisisSjögren’s hashtag as a way to participate in the April awareness activities. You can use the hashtag on Twitter, Facebook, LinkedIn, Instagram, and other social media networks.

Patients can post about whatever they like, remembering that every post is an opportunity to start a conversation about living with the disease and the impact it has on their life. The more others understand Sjögren’s, the more support patients are likely to find. Sjögren’s patients who don’t use social media can click here to view the daily posts.

Patients who don’t know what to write about, or for any other reason, can also update their social media profile picture to include the Sjögren’s Awareness frame.

Other ways of participating include hosting an April Awareness Event in your hometown, at work, at your school, or at your local church – the foundation can help you organize it – or donate to the Foundation here.

The foundation and millions of patients will be thankful for the support and for helping transform the future of Sjögren’s syndrome.

Patients can also become members of the foundation and receive a newsletter for more updates, or subscribe to Sjögren’s Syndrome News to receive our free, weekly newsletter directly in your email inbox.

Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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