Have any of you listened to the Bendy Bodies podcast? I've listened to: Dr. Andrew Callen on Cranial Cervical Instability/CFS leak. Dr. Eric Signman on eye problems in EDS. There are hundreds of episodes to listen to, with experts talking about us! www.bendybodiespodcast.com #bendybodiespodcast

I've been MIA with several follow-up appointments and a big MCAS flare. I'm being scheduled for 3 more surgeries due to venous reflux following iliac vein stenting. Dr.'s suspect cranial cervical instability and HAE type III angioedema. More tests, more specialists. How is your journey advancing?

Do you have chronic migraine in addition to the Trifecta? Have you heard about Chari Malformation? Do you have Chari Malformation? Does anything help with your pain? #hEDS #POTS #MCAS #migraine

Checking in: how can this group assist you today? Do you need some positivity, an ear of someone listening and understanding? Some inspiration? Got any questions? You're not alone, while all of our journeys and symptoms may be different, the struggle persists. We're with you. 💜💜💜

@tapestrymoth.bsky.social I thought of you when I saw this. www.annfammed.org/content/earl...

Hello Friends! I'm just checking in. How are you feeling today? Any changes or updates? In the depths of this struggle, I hope you find peace and comfort today, even if it's very small. Hold onto the little positive things. They matter a lot! 💜 #POTS #MCAS #hEDS #HSD #dysautonomia

I made it through my first IVIG infusion. Thankfully I didn't have any serious adverse reactions so it's safe to continue. I was completely exhausted for the last two days. I slept nearly the whole time. Doc says it'll be 4-6 months following treatment before I start feeling any positive impact.

I'm starting to feel nervous. Tomorrow is my first IVIG infusion. I'm hoping it doesn't cause any adverse reactions. Are any of you going through IVIG infusions? How do you manage sessions and aftercare?

Have you been diagnosed with POTS and MCAS but are still in limbo with an hEDS/HSD diagnosis? The EDS society is making a major update to the diagnostic criteria this December! www.ehlers-danlos.com/new-global-d... #dysautonomia #POTS #MCAS #hEDS #HSD

Hi friends, I need some help understanding: How are you navigating the cost of your health journey? Do you have insurance, pay out of pocket, government assistance, or something else?

Hi Friends. After a year of getting bounced between specialists, I finally met with a Neuroimmunologist. It took another year to get IVIG infusions approved by insurance. Due to surgery, my deductible is met and I can finally get the infusions done. My first appointment is on Monday. Wish me luck!

Dysautonomia International is having their annual conference July 9th-12th. Firends, they have zoom virtual attendance option!!! Click on registration and scroll to the bottom. www.dysconf.org #dysautonomia #POTS #MCAS #hEDS

Hi friends, I'm just checking in. What struggles are you facing today? For me, my BP is low, eyes blurred, migraine, Raynaud's, SFN burning, hands & feet are swollen, fatigued. I also may May-Thurners. Doc put a sent in and that still hurts. This is a pretty typical morning for me. How about you?

Check out these organizations for more on the POTS, MCAS, hEDS: Dysautonomia International www.dysautonomiainternational.org/index.php The Ehlers-Danlos Society www.ehlers-danlos.com Standing up to POTS www.standinguptopots.org Mast Cell Disease Society tmsforacure.org #trifecta #POTS #hEDS #MCAS

This beautiful dog is my service dog, Bergen. He's a Yakutia Laika. Paired with me by Above the Clouds Siberian Service Dogs based out of Colorado Springs. He can alert with POTS and hypoglycemia. Do you have a service dog? How does your dog assist you? #servicedog #POTS #hEDS #MCAS

If you have found your way to this support group, welcome!!! I couldn't find a support group to join so now I'm starting it. I need some help: Would you share some of your story? What are you struggling with? How can the group help support you? #POTS #hEDS #MCAS #dysautonomia #supportgroup

This is a peer support space for those with Dysautonomia Trifecta: POTS, MCAS, hEDS, and related conditions (SFN, autoimmune overlap, venous compression, etc.) 💛 Purpose: Share experiences, ask questions, and support each other.