Where to find autoimmune hepatitis support online
Autoimmune hepatitis (AIH) is a rare disease in which the body's immune system attacks the cells of the liver, causing chronic inflammation and potentially serious damage to liver cells.
Living with a rare disease can feel isolating, but support networks are out there. Here are three online platforms where you can find AIH support that is right for you and your loved ones.
Where to find AIH support online
The Autoimmune Hepatitis Association: AIHA’s mission is to “provide support and hope to patients and families affected by autoimmune hepatitis through disease education and provision of research opportunities.” On their site, they offer listings of patient-preferred AIH doctors, AIHA webinars, links to relevant social media feeds, and a list of other helpful resources, like the Mayo Clinic, the American Liver Foundation, and the National Institute of Health.
Facebook groups: There’s a Facebook group for everything these days. AIH support groups are no exception.
- The biggest one, AutoImmune Hepatitis Support Group, has over 6,500 active members and was founded by an AIH patient.
- The Autoimmune Hepatitis Association has a group of about 3,000 members.
- Autoimmune Hepatitis Group encourages its members to “share thoughts, concerns, questions, links, new treatment methods, pictures of your family, pets or hobbies, or just vent if you need to. Most of all, have fun, and support each other in our open-minded group. Everything goes.”
- Does your child have AIH? Autoimmune Hepatitis in Children is a great place for parents to find resources regarding AIH in kids.
- The groups can get very specific, too, like the Autoimmune Hepatitis (AIH) Liver Transplant Support Group, which is a “support group for those with autoimmune hepatitis who are pre- or post-liver transplant and for their caregivers.”
If you don’t find what you need on Facebook, consider creating your own group!
Reddit: r/autoimmunehepatitis is the place on Reddit to get support, answers, and discussions regarding AIH. Discussion topics range from feelings around COVID-19 and AIH, getting tests and receiving treatments, AIH diets, common symptoms, and clinical research studies. Another good resource is r/autoimmunity, which is a subreddit to provide support for those diagnosed with (or are relatives/friends of those diagnosed with) an autoimmune or autoinflammatory disease.
