Sjogren’s Syndrome Support is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Sjögren’s Syndrome is an autoimmune disease. Autoimmune diseases feature the abnormal production of extra antibodies in the blood directed against various tissues of the body, which tends to lead to inflammation. The hallmark symptom of Sjögren’s syndrome is generalized dryness, typically xerostomia (dry mouth) and keratoconjunctivitis sicca (dry eyes), known as sicca symptoms. Sjögren’s syndrome may cause skin, nose and vaginal dryness and may affect other organs of the body, including the kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system or brain.
Connect with other patients and visit Sjogren’s Syndrome Support Community.
SjogrensSyndromeSupport.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- We Need Your Financial Supportby ModSupport on July 14, 2024
Dear Sjogrens Disease Community, From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us several thousand dollars a month to keep our 40+ rare communities up and running. Would you consider a tax-deductible contribution to Ben’s Friends? Your contribution will enable us to […]
- Reasearch Opportunity foa Common SJS Co-conditionby ModSupport on February 7, 2024
A clinical trial opportunity for adults living with dermatomyositis is enrolling now! If you or someone you know are an adult living with dermatomyositis symptoms despite current or prior treatment, the VALOR Study may be a good fit. The VALOR Study is testing whether the investigational medication brepocitinib, in the form of tablets taken by mouth, will improve skin and muscle problems seen in […]
- Looking For Your Sjogren’s Syndrome Storiesby ModSupport on January 11, 2024
@trust_level_0 Dear Sjogren’s Syndrome Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% […]
- Artificial tears recallby Stoney on June 1, 2023
It came to my attention that in February 2023 there was a recall on two artificial tears. These are Ezricare and Delsam Pharma Artificial Tears, because of potential bacterial contamination. If you use these brands please look into this further. 1 post – 1 participant Read full topic
