#mast-cell-activation-syndrome — Public Fediverse posts

Symptom: Assigned Female At Birth

https://www.illmarks.com/symptom-assigned-female-at-birth/

#acog #afab #art #AssignedFemaleAtBirth #bodyHorror #bodyMapping #bodyart #bodydysphoria #bodyhorror #chronicIllness #dysphoria #Dysphoric #genderAffirmingCare #GenderAffirmingHealthcare #gyn #gynecology #healthcare #healthcareArt #invasive #longcovid #marginalizedGenders #mastcellactivationsyndrome #mcas #medart #medical #medicalArt #nonbinary #obGyn #OBGYN #pwLC #pwme #reproductiveRights #SciArt #SoTiredOfGoingToTheWomensClinic #trans #TransInclusiveHealthcare #TransRights #TransRightsAreHumanRights

Symptom: Mast Cell Itching

https://www.illmarks.com/symptom-mast-cell-itching/

#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs

2025-8-30 Post-Exertional Symptom Exacerbation & MCAS Environmental Illness

https://www.illmarks.com/2025-8-30-post-exertional-symptom-exacerbation-mcas-environmental-illness/

#allergy #art #bodyHorror #bodyMapping #bodymapping #buildingbiology #cfs #chronicIllness #ChronicFatigueSyndrome #chronicIllness #environmentalillness #envrionmentalIllness #healthcare #healthcarereform #healthinsurance #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastcellactivationsyndrome #mastcelldisease #mcas #me #mecfs #medicalArt #medicalactivism #medicalart #medicalblog #medicalreform #MillionsMissing #MyalgicEncephalomyelitis #pem #pese #pwLC #pwme #SciArt #scienceart #usahealthcare #ushealthcare

2025 September & October: So tired of this same MCAS nightmare

https://www.illmarks.com/2025-september-october-so-tired-of-this-same-mcas-nightmare/

#Allergies #art #bodyHorror #bodyMapping #bodyhorror #bodymapping #buildingbiology #chemicallysensitive #chronicIllness #chronicIllness #GI #immunology #longCovid #longcovid #mastCell #mastcell #mastcellactivationsyndrome #medicalArt #MillionsMissing #pwLC #pwme

Symptom: Environmental Mast Cell Activation Syndrome Hypothesis – Mold

https://www.illmarks.com/symptom-enviro-mcas-hypothesis-mold/

#allergy #art #blackmold #bodyHorror #bodyMapping #buildingBiology #buildingbiology #chronicIllness #evironmental #fountainPen #fountainpen #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mcas #medicalArt #MillionsMissing #pnw #pwLC #pwme

2025-8-22 Almost a week out of the house stopped me from getting worse, but healing is SO SLOW

The MCAS Environmental Exposure Nightmare Continues

https://www.illmarks.com/2025-8-22-almost-a-week-out-of-the-house-stopped-me-from-getting-worse-but-healing-is-so-slow/

#art #autoimmune #bodyHorror #bodyMapping #chronicIllness #environmental #inktober #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mcas #medart #medicalArt #MillionsMissing #pwLC #pwme #SciArt

2025_8_19 The symptoms are coming from inside the house.

2026-3-9 edit: A previous version of this page held steps you can take during the acute infection to lower your risk of Long Covid, or lower the severity of how a reinfection will worsen your existing Long Covid.

Information on supporting a FULL recovery from SARS-CoV-2 is now more accessible on its own permalink page here, or from the top bar: Information > Got a Covid Infection?

https://www.illmarks.com/symptoms-are-coming-long-covid-prevention-tips/

#allergy #art #backToSchool #backtoschool #besafe #bodyHorror #bodyMapping #cdc #chronicIllness #covid #covidIsAirborne #covidIsNotOver #covid19 #covid19 #covidcompetent #CovidIsntOver #environmental #health #healthcare #longCovid #longcovid #maskUp #maskup #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mcas #medArt #medart #medblog #medicalArt #MillionsMissing #pwme #SaltingTheVibes #SaltingTheVibes #sarsCov2 #sars2 #sciArt #SciArt #WearAMask #WearARespirator

2025_8_18 I booked a hotel to try to identify/isolate variables. As soon as I walked in the hotel room, I felt my head swell.

https://www.illmarks.com/2025_8_18-i-booked-a-hotel-to-try-to-identify-isolate-variables-as-soon-as-i-walked-in-the-hotel-room-i-felt-my-head-swell/

#art #bodyHorror #bodyMapping #chronicIllness #chronicMigraine #chronicPain #chronicmigraine #covidIsNotOver #CovidIsntOver #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mcas #meCfs #mecfs #medArt #medart #medblog #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme

2025_8_14 I feel better out of the house, which is incongruous with ME/CFS Long Covid.

https://www.illmarks.com/2025_8_14-i-feel-better-out-of-the-house-which-is-incongruous-with-me-cfs-long-covid/

#art #autoimmune #bodyHorror #bodyMapping #cfs #chronicIllness #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mcas #me #meCfs #mecfs #medArt #medart #medicalArt #medicine #migraine #MillionsMissing #neurology #pwLC #pwme #rheumatology

2025-8-9 Is this MCAS anaphylaxis, anxiety, or anaphylaxis from anxiety?

I almost didn’t want to share this one, because I’m in a bit of a nervous state, and I was worried about the people who think people with Long Covid are psychological malingerers, etc. When I had to leave work, and filed for US Social Security Disability, I kept my Generalized Anxiety Disorder out of my initial application, afraid of getting the dreaded “just anxiety,” dismissal that many complex chronic illness kin are familiar with. (I was later told this was a bad move, and to definitely include all mental health and neurodivergence things, which I did for the ongoing process.)

Even as I’m having less anaphylaxis risk, it’s taking time to recover psychologically. I told my therapist how I felt like I backslid over a decade in mental health work overnight from the first recent anaphylaxis episode. She kindly said that while I might feel as scared and threatened as I often did back then, that the trigger was different. I was not feeling that anxious about an email, I was feeling that way about a literal life and death situation, one which I still don’t fully understand the triggers of.

A decade ago, de-stigmatizing mental healthcare was really important to me too. Now, I’m especially aware of how much these issues intersect, so heck yeah, publishing the medical art about anxiety.

Lastly, I wanted to include few examples of the ways in which these issues intersect. These are absolutely the tip of the iceberg.

• Mast Cell Activation Snydrome (often MCAS for space, in my art) can trigger so, so many pyschological symptoms. Mast Attack has a great overview of the topic, and while I haven’t been able to read the study fully because of the severe brain fog, Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome caught my eye.

• Anaphylaxis, or near anaphylaxis, has many symptoms in common with anxiety, from chest tightness to clammy skin, and “a feeling of impending doom”. While MCAS is not allergies, All Things Allergies has an easy intro to anxiety & anaphylaxis, and here’s a study The impact of anaphylaxis on the quality of life and mental health of adults.

• Ehlers-Danlos Syndrome co-occurs with many mental health issues, and I really appreciate how this article lists suspected mechanisms, misattributions, and related factors.

• Postural Orthostatic Tachycardia Syndrome, or POTS, is a form of autonomic dysfuntction (when things your body normally does automatically stop behaving normally), and is a part of my Long Covid. It involves a high heart rate, and often symptoms like room spinning or lightheadedness, trembling or shaking, shortness of breath, and poor bloodflow. POTS is often misdiagnosed as anxiety, and The Disabled Ginger wrote about it here.

Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease.

Moreover, there is a peculiarly modern predilection for psychological explanations of a disease, as of everything else. Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control. Psychological understanding undermines the ‘reality’ of a disease. That reality has to be explained.

Susan Sontag, illness as metaphor (New York: Farrar, Straus and Giroux, 1977), p. 55.

p.s. mental health is physical health and physical health is mental health. you got a literal brain in your body and all of your body is involved in everything that you do. please take care of yourselves and each other. <3

https://www.illmarks.com/2025-8-9-is-this-mcas-anaphylaxis/

#allergy #anaphylaxis #anxiety #art #autoimmune #bodyHorror #bodyMapping #chronicIllness #gad #generalizedAnxiety #immune #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mcas #medart #medblog #medicalArt #medwriting #mentalHealth #MillionsMissing #pwLC #pwme #SciArt #sciblog #sciwriting #symptom

This is my first kiln firing in 1.5 years. It feels good to know that I am finally starting to get better. Although I've had to take drastic precautions and am creating in a completely different fashion to accommodate my illnesses, it feels so good to sink my hands in clay again.

#sylviealvarezart #ceramicsculpture #kilnfiring #ArtistLife #ChronicIllness #mastcellactivationsyndrome #MoldToxicity #recovery

Symptom: MCAS Bucket Explosion
Triggers Include: Drinking Water, Brushing Teeth, Being Inside

Seattle area folks who can attend IRL events:
I will be teaching a respirator-required art workshop related to this project, Bookmarks on the Body, at QTBIPOC Arts Space The Fishbowl on August 27, 6-9pm. I would love to see you there.

While this is not a hybrid event, I am creating virtual-only and disability-focused workshops! I will be using what I learn from this first workshop to improve the format, structure, and content.

If you have any questions, please feel free to reach out to me illmarks @ nyx mir dot com

https://www.illmarks.com/symptom-mcas-bucket-explosion/

#allergy #art #autoimmune #bodyHorror #bodyMapping #chronicIllness #chronicPain #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mcas #medart #medicalArt #migraine #MillionsMissing #pwLC #pwme #SciArt #seatac #seattle

2025_5_6 Eternal Suffering of the Mast Cell

https://www.illmarks.com/2025_5_6-eternal-suffering-of-the-mast-cell/

#art #autoimmune #bodyHorror #chronicIllness #longCovid #mastCell #mastCellActivationSyndrome #mastcell #mcas #MillionsMissing #pwLC #pwme

Health speculation…

I'm still waiting for further appointments and more blood work (and possibly more tests after that). My doctor hasn't said so specifically, but she seems to be looking in the direction of something like #MCAS (#MastCellActivationSyndrome) and my thoughts have been leaning that way too. I had already considered this as a possibility because one of my symptoms is intensely itchy skin. There is a *lot* of overlap between MCAS and #dysautonomia and they can often exist as comorbidities. There are some aspects of what's going on with me that could suggest both, although it's impossible to say anything for sure without specific testing. There are also other things too that can look like MCAS... and I'm really not trying to actually diagnose myself here, I just really, really want to understand what's wrong. I'm so worn out from this and, at times, I've been really scared.

I have been taking a couple of different antihistamines and they were helping the itching and shortness of breath as well as waking up with intense anxiety. But in order to do a blood draw tomorrow, I've had to stop taking these for a few days and last night and today I've really felt the difference and it's been horribly uncomfortable.

I got the results back from my heart monitor and it showed instances of sometimes very high tachycardia, but I haven't spoken to anyone about this yet so I don't know how serious it is. All my doctor has said is that I need to see a cardiologist and that appointment is later this month and I'll see my primary doctor a little before that.

#ChronicIllness

2025-2-12 Starting imatinib for resistant mast cell symptoms.

https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/

#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki

2025-1-19 MCAS trigger: allium smell

https://www.illmarks.com/2025-1-19-mcas-trigger-allium-smell/

#bodyHorror #chronicIllness #histamineBucket #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mcas #medart #medicalArt #MillionsMissing #SciArt #scienceArt

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

1/2

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #MastCellActivationSyndrome #mastcells #histamine #lowhistaminediet #mastocytosis #anaphylaxis

MCAS (particularly when combined with being autistic) gives you the ability to smell *everything* which sounds like a superpower, but I can assure you is absolutely vile.

Thankfully my new meds seem to be really helping. Ian opened a new packet of lightly scented dog poo bags last night and I didn't immediately eject them from the house, so I'm calling this progress! :ablobcheer:

#MCAS #MastCellActivationSyndrome #ActuallyAutistic #Autistic

I've been needing my anti-nausea meds more frequently recently, which I assume is just MCAS kicking up because spring allergies?

#MCAS #MastCellActivationSyndrome

UK folks! I'd be really grateful if you could take a moment to sign this petition - Fund increased care and support for people with #MastCellActivationSyndrome.

I've been trying to get a diagnosis for #MCAS but the NHS doesn't really recognise it as a condition. Many MCAS patients are misdiagnosed as a result meaning that we're not getting appropriate care or treatment.

Thank you! 🧡

https://petition.parliament.uk/petitions/652842?fbclid=IwAR0QD-spKrj-UmNGFRXwZFhxKgEe24qA4jmmCStPX7JOrhEtEI2IK2hYSQ8

#petition #help

This is an excellent BBC article on #MastCellActivationSyndrome and the complete lack of knowledge surrounding this illness.

#MCAS can be triggered by Covid, but I've had debilitating symptoms for over 5 years and the flare I'm currently in is awful (I'm down to around 10 safe foods and any exertion makes me breathless)

I've a catch-up with my GP next week but I'm not hopeful of a positive outcome. Diagnosis through the NHS seems impossible. :ablobrollingeyes:

https://www.bbc.co.uk/news/uk-england-london-66998448

2/
“Our coverage spans related infection-associated chronic conditions such as #myalgicencephalomyelitis, #dysautonomia, #mastcellactivationsyndrome, & more.Unlike many outlets, we continue to report on the impact of the ongoing #Covid19 pandemic. No denial, minimizing, or gaslighting here”

@longcovid #LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @covid19 #COVIDー19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19

I’ve finally written a long list of my symptoms for the Doctors on Monday.

I’ve been passed from pillar to post over the last five years and it’s exhausting. I’ve a strong suspicion I have Mast Cell Activation Syndrome but I suspect getting a diagnosis in the UK is pretty tricky.

Has anyone managed successfully to get a diagnosis through the #NHS, as I’m not sure which dept I need to be referred to?

#MCAS #MastCellActivationSyndrome

Ehlers-Danlos/HSD Awareness Month, day#26: current mood (if you know, you know)
#EDSAwarenessMonth #connectivetissue #mastcellactivationsyndrome #EDS #hEDS #MCAS

Hey, here's a fun new development. I have successfully reintroduced (the occasional) Diet Coke into my diet.

Also, Coke Zero now makes me violently ill. So I have a new thing to be super obnoxious about when ordering at restaurants.

#MCAS #MastCellDisease #MastCellActivationSyndrome