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In addition to SAA’s own in-person support groups and online forums, there are a number of online support groups created by those in the community. Below we list some of these groups in an effort to help our community find connections and support.
Please note: these groups are not affiliated with SAA. The content posted in / through these groups are not monitored nor controlled by SAA. We take no responsibility for content shared through these groups, and are sharing them for informational purposes only.
If you’d like to have your virtual support group listed on this page, please contact our Programs Coordinator, Cynthia Rodriguez for consideration at programs@spondylitis.org.
From the group's page: “Welcome to the Young Adults Living with Spondylitis virtual support Facebook page. If you're between the ages of 18-29 living with Ankylosing Spondylitis or related diseases, you belong here. Share your story, ask questions, let off steam, offer advice or encouragement. Please be supportive of one another!”
From the group's page: “As parents, we all share similar long term dreams for our children. We want them to be happy and appreciate the many gifts and beauties this world has to offer. But, sometimes, these dreams are shaken or even shattered when your child is diagnosed with a chronic disease such as AS. Although our journeys are unique, we have a common bond: ankylosing spondylitis. The greatest challenge comes not only in taking care of our young warriors, but also in taking care of ourselves. I invite you to use this platform for sharing your personal and your child’s experience with AS. ”
From the group's page: “A place where women can openly discuss how the disease affects our lives. Feel free to discuss pregnancy concerns, family concerns, differences in disease process or anything else you feel uncomfortable discussing in a coed group. This is not meant to drive a wedge between the sexes or discriminate in any way. This group is meant to allow women to talk about how this disease relates to us.”
From the group's page: “We are black women coming together to learn more about our disease and what treatments are available that work best for us. Hopefully, we can rally together, support each other, and gain the medical community's attention. We want and need to be included in medical research studies as well as included in statistical counts. And last but not least we are BLASST, Black Ladies with Ankylosing-Spondylitis Standing Together
Spoonie Chat is the brain child of Dawn Gibson, who, like many, felt alone and abandoned while battling the symptoms of this faceless disease. So, she created Spoonie Chat - a weekly Twitter gathering of individuals from all over the world who participate in supporting one another through questions and encouraging messages.
From the group's page: “This is a group for anyone who has ankylosing spondylitis, knows someone with AS, or is an AS expert. The purpose of the group is to share anything you have found that helps with the pain, stiffness and anything else that comes with AS. Build community with other AS patients and learn about living with this condition.”
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