Anne Maitland - "Understanding Mast Cell Activation in EDS & HDS"

[@kyepkk785]

Around 80% of the way through she references the fact that it was a veterinarian that discovered critical things related to EDS. And we're looking at research papers back from the '70s. I love this woman because her research has helped save my life.

[@graylingwild]

Thank you so much for this informative and hopeful presentation!

[@pippy2157]

Incredible presentation!! Thank you so much 🙏💖

[@SweetiePieTweety]

That 25:00 marker about it takes some kind of trauma to activate. Yep! BINGO!

[@tiffariff]

Started after my first anaphylactic response to a wasp sting! I wish I never got stung 🥲. It was also triggered slightly yet not to the point I noticed my senior year when I was under a ton of stress and also got pneumonia (that’s when hypothyroidism kicked in - guess my thyroid was trying to warn me something was brewing), but the anaphylaxis opened a hornets nest of underlying stuff. And then the Covid vaccines made it so that the dysautonomia and EDS started flaring enough for diagnosis. Real Covid has made everything worse and made the digestion issues that really weren’t a big bother in my life to the main thing now. Took months to die down where it doesn’t render me useless for hours with GERD/bloating and resulting lack of sleep. So yeah… it’s like roadmapping the triggers that led you to where you are now that you have to deal with - and also know that you’ve got to avoid those if you can! There’s a trend of all these linked disorders flaring in your 20s but I have a feeling it’s just the time it takes for the triggers to pile up and your body starts sending out the message via crappy symptoms.

[@adrianajoy8791]

Wow! Thank you!!!!! So much!!!

[@kbellmurray]

Thank you for this.

[@brittanyharton4784]

Where can I get a copy of the slides?

[@sarahwind5206]

Hi! Thank you so much for your informative presentation. I have P.O.T.S, Trigeminal Neuralgia, Insomnia. I.B.S. and Panic Disorder. I take beta blockers for the POTS, and I'm on Carbamazepine, Gabapentin, and Baclofen for the Trigeminal Neuralgia. The panic attacks are somewhat under control but my main symptom now is severe IBS. I can't eat much of anything without pain, sometimes a racing heart, and frequent bowel movements resulting in diarrhea. I'm interested in the mast cell idea. I want to know the cause of this. Any help would be much appreciated. Thanks

[@eiendeeai]

Try out cholestyramine or colesevelam

[@tiffariff]

Look into over the counter mast cell stabilizers that are safe to try for you (make sure you ask your doc/check for any interaction with your conditions or meds), if it helps- then it is definitely worth seeking further care for.

[@sarahwind5206]

I wanted to add that I also take Xanax for both anxiety and sleep.

[@mrscpc1918]

I haven’t got a cat in hells chance of getting appropriate care for this in the Uk

[@tiffariff]

While I wouldn’t say appropriate I’ve gotten care in the US of all places. Much diff problems here but still a very hard system- took 4 years since a doctor (an ENT of all specialists) suggested it to get official diagnosis, the amount of allergists I’ve saw who just wanted to throw allergy shots at me was abysmal.