Anne Maitland - Living with Mast Cell Activation Syndrome

[kaymack]

It’s great to have access to information like this, but it’s so frustrating trying to find a doctor who will listen and educate themself so they can truly help you get better. The reason doctors don’t see patients until they are debilitated by disease is because you are continually brushed off until you are really sick and they can’t ignore it any longer. It took me 20 years to be diagnosed with fibromyalgia and when I was finally diagnosed was because I had researched and presented it to my doctor and said I’m not leaving until this is figured out.

[imaginarylife]

Brilliant work. Everyone in the medical profession needs to learn about HSD, EDS and MCAS. Medical 'gaslighting' is very real and needs to end.

[kimcissell]

I am an RN with MCAD. I am a multiple rebound anaphylactic to insect stings. I cannot get the ED staff to understand MCAD. This is by far the best presentation that I have seen. I shared this with the amazing paramedics - EMTs that kept me alive.

[SeriinaCovarrubias]

She's doing the lord's work this doc. She did a fantastic presentation. Honestly, even better than Dr. Afrin.

[whisperingsage]

Around 21, an audience member sneezed, and Dr Maitland said "God bless you" and then carried on. That's cool.

[quitemountainwoman]

Thank you so much for your diligence to educate we the patient 🙏

[Jenny-fl]

This video is fantastic! Thank you for sharing this presentation. I am grateful to be able to watch this video on YouTube especially after everything I’ve been through. Phew! I hope doctors start to catch on soon.

The ignorance and lack of awareness surrounding this disease is astounding. Holding the power to misdiagnose a patient with a disease they don’t have and prescribed medication for, can be life threatening and life altering. It took more than a decade.

There is an immediate need for action that requires all medical professionals (especially those who actively practice medicine) to continue their education beyond medical school.

Education enhances awareness and awareness is essential to the future of medicine.

Thank you for your time and contribution to educating others about (MCAS) Mast Cell Activation Syndrome. 🍀

[magicalpatterns]

Wow so creative, smart, and a true advocate for patients that have been misdiagnosed and not validated. I was misdiagnosed, finally after 5 years of pure misery I’m on treatment s.

[mskeakitty]

Love Dr. Maitland for her interest, knowledge, and presentations on MCAS and EDS.

[PARoth]

Wow, as a MCAS person for the last 12 years with anaphylaxis, chemical sensitivities, histamine intolerance, IBS blah blah..and a tryptase of 4, (tested with Brigham &Women’s Mastocytosis Dept about 10 yrs ago where I did not meet WHO criteria by 1 point for a MCAS diagnosis 😂 so my diagnosis was fibro which I also have) I have to say this is the BEST info I have come across. I am in Florida and wanted to see an allergist a couple years ago at UF HEALTH who dealt with MCAS, to get an appt I had to have a “positive tryptase” which, as far as I know is a 20 though some might accept as low as a 12. THANK YOU for the new info! Now to find that informed doctor..lol, probably impossible. I only discovered I have hyper mobility a few weeks ago when I did a questionnaire with 23andMe and it asked me about 10 hyper mobile positions and I had 7. Not one Dr has asked me about that. Ever.

[magonzo]

Working on diagnosis myself. This all sounded familiar. I’m fortunate to live in an area where there is access to experts that are getting me closer to understanding what is going on. Two specialist believe it’s mast cell activation. I’m grateful for this video.

[darondatoole]

Another excellent presentation related to discovering the basis for hard to define health issues.

[whisperingsage]

Very widespread problem that is worsening that very, very few doctors know anything about. The more Docs like Ann Maitland do talks on this, the better we have a chance with other doctors. Bless her for her work.

[sheiladyck]

When I was in my 20's (I'm now 59) a Doctor here in Lewistown, MT where I live, basically told me I was nuts, put me on antidepressants and sent me on my way. I had pneumonia in 7th grade, and contracted the Chicken Pox in my late 20's. I had severe Endometriosis and had a complete Hysterectomy at the age of 31. I was diagnosed 2 years ago with the rare Mast Cell Disease called Telangietasia Macularis Eruptiva Perstans via a skin biopsy, from a rash that would not go away due to chemicals in some hair dye. It's been pure hell throughout the years. I ALWAYS have sores on my head, in my ears and up my nose. I have several Autoimmune issues as well, RA, Osteoarthritis, Crohn's/IBS and Sjogrens, sleep disorder, ringing in my ears, the list goes on and on. I have been out to Mayo Clinic in Rochester twice, they were not much help - because, at the time I was there apparently my Tryptase levels were "fairly low" so they said they would just monitor me. Any chance this wonderful Doctor could help me?

[caroleschaefer]

This is the most informative video I've seen. Thank you Ann Maitland. I would send it to my doctor, if I thought she would read it.

[ForeverRuth]

MCAS is constantly pulling the rug from under my feet, although I recently had an interesting conversation with a chemical food engineer, at the time I was literally at the end of my tether with MCAS .
I discovered from this conversation that milk now has a tree bark extract that helps stabilise the milk proteins, from that moment I gave up milk and cheese, I was able to give up the beta blockers and blood pressure tablets, there was no need to visit the cardiologist.
I am currently surviving on eggs and fries, if I deviate from these 2 food sources, I am looking at a 3 week recovery.
I have found the following foods are a massive trigger . Fruits, veg, sauces, dairy, gluten, juice, wine, sulphites, any nuts with a skin, spices, coffee, teas.
Environmental triggers, cement, plaster, kitchen cleaner, Persian rugs, raffia rugs, basket material, HITT
So Eggs and fries it is 😷🤒

[albinamarques]

Thank you. I appreciate all your knowledge, clear & concise explanation of MCAS. I am currently being treated by Dr Trevino here in Clearwater FL

[andreawisner]

I wonder if there are any allergists this good in Florida. Dr. Maitland is obviously one of the best in the country.

[ednashelby]

Very good presentation. I wish I could go to NY to see her for my MCAS. After an episode of MCAS and the ER visit my doctor did test and my tryptase level was 17 but he still said it was hard to diagnose. I go into anaphylactic when it hits me. The only tigger I can put together is the change in temperature...mostly the cold. It is not what I eat.

[lucyavega]

This is great, thank you so much. How can we change our environment though? From what I have been reading, those people who have been dealing MCAS are so afraid to go out to avoid triggers.