Online MCAS Communities

There are several online communities where people with Mast Cell Activation Syndrome (MCAS) share experiences, advice, and support. Here’s a list of forums, Facebook groups, Reddit communities, and other resources you might find helpful.

📌 Forums & Websites

1. Inspire MCAS Community – MCAS Support Group on Inspire
   • Hosted by The Mast Cell Disease Society (TMS), this forum has discussions on symptoms, treatments, and research.
2. The Mast Cell Disease Society (TMS) – Website
   • Provides educational materials, support group listings, and advocacy information.
3. The Ehlers-Danlos Society Community Forum – Website
   • Many people with EDS also have MCAS, and this forum includes MCAS discussions.
4. Phoenix Rising (ME/CFS, MCAS, POTS) – Website
   • A forum for chronic illness discussions, including MCAS-related topics.

📌 Facebook Groups

💡 Most groups require you to request to join and answer screening questions.

1. Mast Cell Activation Syndrome (MCAS) & Histamine Intolerance Support – Group
   • Large community focused on symptoms, treatments, and diet.
2. MCAS, Histamine Intolerance, and POTS Discussion – Group
   • Covers multiple conditions, including POTS and MCAS.
3. MCAS & Histamine Intolerance Diet and Lifestyle Support – Group
   • Focuses on dietary and lifestyle adjustments for managing MCAS.
4. Low Histamine Lifestyle for Mast Cell Activation & Histamine Intolerance – Group
   • Great for discussing food, recipes, and safe products.
5. MCAS & Allergic Disease Support – Group
   • Covers MCAS as well as other allergic and immune-related conditions.
6. Low Dose Naltrexone (LDN) for Chronic Illnesses – Group
   • Not MCAS-specific, but has discussions on LDN for inflammation and immune conditions.

📌 Reddit Communities (Subreddits)

1. r/MCAS – Join here
   • Dedicated MCAS subreddit with discussions on symptoms, medications, and lifestyle management.
2. r/HistamineIntolerance – Join here
   • Focuses on dietary management of histamine issues, which overlap with MCAS.
3. r/EhlersDanlos – Join here
   • Many EDS patients also have MCAS, so there are frequent discussions about it.
4. r/POTS – Join here
   • Covers POTS and its link to MCAS, with discussions on symptoms and treatments.
5. r/Autoimmune – Join here
   • General discussions on autoimmune and immune-mediated conditions, including MCAS.

📌 Other Online Communities & Resources

1. The Mast Cell Mastery Blog & Community – Website
   • Run by Beth O’Hara, a functional health expert with MCAS, covering diet, lifestyle, and treatment options.
2. Facebook Messenger & WhatsApp Support Groups
   • Some smaller groups exist by invitation. You can ask in larger FB groups if anyone runs smaller, more personal support chats.
3. Discord Servers
   • Occasionally, MCAS-related Discord servers pop up. Searching in r/MCAS or other forums may help you find one.

💡 Tips for Engaging in These Communities

✅ Be mindful that experiences vary—what works for one person may not work for another.
✅ Always check the credibility of medical advice with your doctor.
✅ If a group feels overwhelming or stressful, it’s okay to take breaks and find one that feels supportive.

This is an AI rendering of groups. We know there are more, so please feel free to share other groups by filling out this form.