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My MCAD Stories | Part 3: Hereditary Alpha Tryptasemia, Systemic & Cutaneous Mastocytosis

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In honor of awareness month, "My MCAD Stories" is a 3 part video series in which I share about my journey with mast cell activation syndrome, as well as feature the stories of others with various types of mast cell disorders.
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Опубликовано:

28 авг 2024

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Комментарии : 29

@janetleeharrison 3 года назад

Thank you to the wonderful ladies for generously sharing their experiences! Hearing their stories really helps build a better picture of what it is really like to have MCAD. I hope that a medical student or professional will watch this & hear something that triggers a thought or idea that will help all MCAD patients in some way. You never know what will spark a breakthrough or where it will come from. Hugs to all!

@serrahgossmann8547 3 года назад

You are so brave Ashley! I’m blessed to know you. Thank you for all your help, guidance and friendship. Xo

@chronicinokla 3 года назад

Very informative and put together. I truly appreciate all the information you have provided. I'm relaying some questions to my Dr about testing. Thank you all who were involved

@monicamiller5587 Год назад

Thank-you for sharing your stories.

@erinhession 8 месяцев назад

Wow, we have SO many similarities! Have you ever tried Amlexanox peptides? They are an anti-allergic compound and they were a game changer for my food allergies related to histamine intolerance and MCAS! I take 40mg twice a day now and can eat SO many more foods. You might want to try that! Also, which genetic test did you do? I tend to think a lot of my issues were prompted by genetics.

@hopeburke2187 3 года назад

Your amazing and strong!

@5p674 3 года назад

Mast cell disease and high intelligence seem to go hand in hand. I wonder if anyone has ever checked that out?

@cambriatevis6907 3 года назад

There is an increased incidence of autism in patients with mastocytosis.

@fuelerr 3 года назад

Question for Ashley. I have HATS and I was wondering if you suffer from anxiety? My anxiety has gotten worse over time and that seems to correlate to my Serum Tryptase levels getting higher.

@angelablair3473 2 года назад

I have HaT along with several other disorders like MS,POTS,CKD stage 3, heart stage 2, Nonalcoholic fatty liver, Dysautonomia,seizures...My question for anyone else that has HaT has your body attacked your major organs too?

@Nat524Ricci 3 года назад

I def have this. And Cushings Disease. And massive heard damage (fistula and aneurysm) found and repaired on my 29 birthday, 8m after having my son. Lord Help Me

@mungbean345 3 года назад

Hugs.

@beautyfromashes14 2 года назад

Prayers and hugs to you.

@SobrietyandSolace 2 года назад

So is HaTS possibly a subtype of EDS? Does it explain those who have the hEDS+MCAS+PoTS trifecta?

@shannonnoseworthy 3 года назад

I'm waiting for blood test results. I've been suffering for a very long time. I'm finally getting taken seriously now that it looks like I'm 6 months pregnant and swelling everywhere. I spoke to an allergist over the phone and he is sending me to St. Michael's hospital in Toronto. I'm curious where in Toronto you went to get help?

@ClareBoyd-f8c 10 часов назад

Miller Maria Lopez George Lee Jessica

@billdoty6438 3 года назад

Question if anyone can answer. So far I am only seeing young woman with EDS and similar issues. Do men have this too? Or there’s no male willing to come here to talk about it. It seems to all be just happening to females

@marialazarova5373 3 года назад

I used to work in a physio department in a big hospital and met a male patient who eventually got diagnosed with EDS. He had joint issues and some chronic fatigue issues and was in his late 20s.

@SobrietyandSolace 2 года назад

Our female hormones make us more bendy and we have so many extra organs that can rupture as our pelvis is split down the middle so when the two sides stretch apart it really hurts too

@monicamiller5587 Год назад

Omg, this is me.