Hell's Bells & Mast Cells
@HBMastCells
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Currently in #MCAS remission. MCAS treatment eliminated my #EDS and #dysautonomia symptoms –see my blog! Humor writer, poodle trainer, and now figure skater!
Joined September 2016
#MCAS symptoms can range in severity from discomfort to disability. Tests and treatment can help.
hellsbellsandmastcells.com
“My body is constantly having an allergic reaction.” This is my quick response when people ask what is mast cell activation syndrome (MCAS). However, MCAS is caused by mutated mast cells, not...
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Things I wish I knew earlier: MCAS related mutations can be acquired…. Like Pokémon 😖
pubmed.ncbi.nlm.nih.gov
Within the last decade, and in particular since 2012, research has greatly extended our understanding of the molecular basis of systemic mast cell activation disease (MCAD). Initial studies demonst...
@MamaCassOFee @DiaryofaSickGrl Certain treatments such as chemotherapy or targeted therapies can eliminate mutated stem cells. However, it remains unclear how existing or new treatments could affect the stem cells driving various MCAS related mutations. The majority of these mutations are acquired over time.
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“As #digestion became increasingly painful in my 20s, I began vigilantly reading labels in grocery stores. However, I never thought to read all the #ingredients in my #medications”: https://t.co/md0PO7iWAm by @hbmastcells #MCAS #ChronicPain
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My most read post of 2024 was about how hard it is to access mast cell activation syndrome (MCAS) testing. I can't believe we are still raising awareness that no test can rule out #MCAS.
hellsbellsandmastcells.com
Most skaters daydream about going to Olympics, landing their hardest jump, or skating the perfect program. I daydream about turning the ice rink into MCAS testing facility. The idea began when I...
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Do you have an emergency treatment protocol for MCAS signed by your doctor?
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Do you have a signed emergency protocol for mast cell activation syndrome, adrenal insufficiency, or another health condition? https://t.co/QfFMLVlO3f
hellsbellsandmastcells.com
I didn’t immediately go to an endocrinologist, because I thought I could manage secondary adrenal insufficiency on my own. After all, I’d conquered living with mast cell activation syndrome (MCAS),...
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MCAS can cause dysautonomia, but sometimes patients assume they don’t have MCAS because they don’t have rashes or anaphylaxis. A lot of MCAS patients don’t have rashes or anaphylaxis. There are so many other symptoms to be aware of! 🩵💜
hellsbellsandmastcells.com
“My body is constantly having an allergic reaction.” This is my quick response when people ask what is mast cell activation syndrome (MCAS). However, MCAS is caused by mutated mast cells, not...
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Dysautonomia patients deserve access to MCAS testing, evaluation, and treatment. While salt helped improve my blood volume, MCAS treatment (not just antihistamines!) stopped my blood vessels from leaking in the first place. I no longer struggle to stand or use stairs.
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Mast cell mediators can cause: 🚨 leaky blood vessels 🚨 inappropriate vasodilation 🚨 inappropriate vasoconstriction 🚨 inflammation that impedes blood flow 😵💫🥴🤢😱
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Although I don’t experience POTS anymore thanks to MCAS treatment, I’m very passionate about raising awareness that MCAS can cause POTS. 🩵 https://t.co/4suj2vG6c5
hellsbellsandmastcells.com
“My body is constantly having an allergic reaction.” This is my quick response when people ask what is mast cell activation syndrome (MCAS). However, MCAS is caused by mutated mast cells, not...
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How I Zumba'ed my way to an endocrinologist after my MCAS symptoms went into remission #adrenalinsufficiency
hellsbellsandmastcells.com
Beyond MCAS: Secondary adrenal insufficiency – How I Zumba’ed my way to an endocrinologist
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Since significantly cutting down my MCAS medications few weeks ago, I’ve updated my About Me page 😊 Dreaming of the day MCAS remission after severe symptoms is ordinary
hellsbellsandmastcells.com
Living with mast cell activation syndrome (MCAS) can be an isolating experience, not only because it’s debilitating, but it is extremely difficult to understand. MCAS is complicated and unique to...
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MCAS medication update in my latest Patreon post 😊 Thank you patrons for supporting my work and helping others learn about MCAS and secondary adrenal insufficiency!
patreon.com
Get more from Hell's Bells and Mast Cells on Patreon
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Mast cell mediators, such as histamine and tryptase, can directly & indirectly cause unstable joints, chronic pain & other connective tissue issues. I truly believe my CSF leak, subluxations & other damage to my body could have been avoided if I had adequate MCAS treatment sooner
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May is EDS Awareness Month. 🦓💜 I strongly believe all patients diagnosed with hEDS should have access to MCAS testing and evaluation by a MCAS specialist. Has MCAS treatment helped reduce your hEDS symptoms? https://t.co/VE2oALJiBN
hellsbellsandmastcells.com
“What did you do?” ask the ER nurse, rolling me into an exam room. “Exist,” I wanted to say. How could I explain my foot had randomly subluxated while I was making dinner? One minute it was functio...
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Today, I am celebrating three years of MCAS remission! 💜 Thank you for following my journey and helping me to raise awareness that MCAS treatment can significantly improve lives.
hellsbellsandmastcells.com
Today, I am celebrating three years of MCAS remission, and it still feels surreal. I still have imposter syndrome about the most mundane activities like riding in an Uber or going to a gym. I...
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I will be celebrating three years of MCAS remission next week! I still get a lot of the same questions that I've written about, so I've create a page with links to all of my remission blog posts.
hellsbellsandmastcells.com
In 2021, my mast cell activation syndrome (MCAS) symptoms went into remission thanks to a combination of first lines of treatment and doxycycline. In 2024, I began to decrease to successfully my...
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I'm always shocked when this research isn't included in articles about fragrance
pmc.ncbi.nlm.nih.gov
Fragranced consumer products, such as cleaning supplies, air fresheners, and personal care products, are a primary source of indoor air pollutants and personal exposure. Previous research indicates...
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Secret weapon... to increase health care expenses and disability? Lots of studies shows perfume is not the answer: Overall, 34.7 % of the population reported health problems when exposed to fragranced products. #MCAS @wsj
wsj.com
Employers are using scent to boost moods and get workers to come in. Just be careful about the combo of lavender and pumpkin pie.
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It’s Rare Disease Day! You don’t have to have a rare disease to help raise awareness! 💜 Conditions that are not rare: MCAS, hEDS, POTS, and secondary adrenal insufficiency https://t.co/VF3BTlIxya
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