Peter Vadas, MD, Immunology | Advances In Our Understanding Of Mast Cell Activation Syndrome

Presented at the Pain: Shedding Light on Inequities of Health - Ehlers Danlos Syndromes and related disorders, as well as Spontaneous Intracranial Hypotension Caused by a Spinal CSF Leak Conference on Saturday, November 7, 2020.

Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.

[fuelerr]

Great lecture Dr Vadas. You diagnosed me with HATS a few years ago.

[isla]

Hugely useful thank you!! Appreciate you providing this information. After suffering with most of these symptoms since my teens, it took stumbling upon a TikTok video of a young woman who developed Crones disease from having MCAS. I have been investigating ever since and it all makes sense finally. Next step is to get tests done.

[RedRedux]

Incredible doctor, he gave me my quality of life back ♥️ can't say thank you enough 🙏

[suzannebrown]

I have been diagnosed with IBS, ulcerative colitis at 19 years, chronic GERD at about 12 or 13 years, kidney issues (in my 70s), pancreatitis (in my 60s with a congenital extra duct in my pancreas, gall bladder disease in my 50s, many allergies (starting at about 18 or 19 years, migraines starting at 19 years, asthma when I was in my 40s, osteoarthritis in my 20s, shaking hands in my 50s, rosacea in my 40s, idiopathic numbness in my legs in my 60s, and possible Sjogrens disease in my 70s. I was wondering if any of the above issues could be caused by a problem with Mast cells or Tryptase production, besides my many environmental plus insect allergies, especially as my allergy issues seem to get more numerous as I age. I also have sinus problems. I am now 76 and since I've had the COVID virus back in November, I've had problems with chronic fatigue.

[reneeodayok]

Can menses be a trigger for MCAS? I have "catamenial" anaphylaxis. Looking into things I went down the MCAS rabbit hole due to a seemingly flare up that went outside my menses time. I'm thinking I may have this. It sounds very similar to my situation.

[zoemarialawson]

Can anything mimic Mastocytosis with spindle cells and high Trypatase??? On a bone marrow biopsy???

[jackiedriver]

Thank you. My resting Tryphase level is 21. I have had a CT scan showing an enlarged spleen. My biggest day to day issue is multiple chemical sensitivity. Chemical perfumes and fragrances. If perfume touches my skin I have anaphylaxis. My question is there mast cell medication which can result in being able to be amongst people with perfumes? Kind Regards

[leecromer]

My adult son has small red spots/blotches on his skin not raised blotches such as hives around his knees, ankles and thighs, he has no itching and doesn’t appear to have any other symptoms in fact if you couldn’t see his skin you wouldn’t know there was anything wrong but he has been told he has mastocytosis…is there any other reason for his symptoms…

[zoemarialawson]

My husband is thought to have ism indolent mastosytosis. He gets flushing red face. Neck . ears. Upper thighs. Bmb shows no kit but has spindle cells. Resting Trypatase 50
He feels very hot when a attack. His 1 genetic variant is in Asxl1. Anyone have that ??? He is 62

[pcfrivera]

So are mast cells only there to make us sick?

[ClareBoyd-fc]

Miller Richard Jones Cynthia Allen Susan