Mast Cell Activation Disorder

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Mast Cell Activation Disorder
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    corbynmayEDS
     • 
    ·
    @corbynmayeds
    Yesterday

    I'm new here!

    Hi, my name is corbynmayEDS. I'm here because I have an EDS, MCAS and POTS diagnosis and am interested in learning more about all three conditions :))

    #MightyTogether

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    Chris LAmarca
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    @chrislynn1
    Last Week
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    Group Leader
    Chris LAmarca
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    @chrislynn1
    Under 50 and Dying Last Week
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    Waiting for results…

    While I am waiting for results, I am choosing to focus on the joy of spring. The results that have come in are so up-and-down and all over the place. My thyroid is low now, and there is protein in my urine and I am going through periods of exhaustion so bad I can barely move. Tomorrow I will get the CT results for my lungs. Instead of focussing on all that, I am choosing to focus on the birds chirping and the sun shining! I hope everyone has a wonderful day.

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #raynauds #MentalHealth
    #Depression
    #Anxiety
    #ChronicPain
    #ChronicIllness #Disability #DistractMe

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    corgiville
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    @corgiville
    Last Week

    I’m new here!

    Hi, my username is corgiville, chosen for one of favorite books by Tasha Tudor. I'm here because I developed mast cell activation syndrome around 2013, which has almost completely paralyzed my intestines and has now started attacking my muscles, leaving me mostly homebound. I just discovered this site and I already feel much less alone than I have for the past 10 years.

    #MightyTogether #CommonVariableImmuneDeficiency #PrimaryImmunodeficiency

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    Group Leader
    Chris LAmarca
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    @chrislynn1
    Multiple Health Challenges March 7, 2023
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    Chris LAmarca
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    @chrislynn1
    March 2, 2023
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    L star
     • 
    ·
    @laurastar
    March 1, 2023

    Needing a Mast Cell Treatment Center… Any Ideas?

    Does anyone know the best place to go to get treatment for mast cell disease? Anywhere. I’m in awful shape and really need help but can’t get proper treatment so far.

    #MastCellActivationDisorder #MastCellDisease #MultipleChemicalSensitivity #Systemicmastocytosis #MyeloproliferativeNeoplasms #ChronicMyeloproliferativeNeoplasms

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    Chris LAmarca
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    @chrislynn1
    February 28, 2023
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    Happy Rare Disease Day!

    Today is a day of awareness for rare diseases, of which I have a few. For those of you who belong to the rare disease family; Happy Rare Disease Day! 🥳💜

    Anyone who wants to know more about rare diseases, click here: www.rarediseaseday.org

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe

    Rare Disease Day 2023

    Raising awareness for patients, families and carers around the world that are affected by rare diseases.
    27 reactions • 5 comments
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    Group Leader
    Chris LAmarca
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    @chrislynn1
    Under 50 and Dying February 25, 2023
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    Hello!

    It has been a while since I have posted. There is an odd feeling to surviving. Almost a guilt, because I said my goodbyes, and was at peace with going, but my body was not ready to let go. My best friend ended up calling an ambulance, I was hospitalized for more than two weeks and released. I have been doing a ton of testing since. I have found an amazing pain specialist. Working with a great physiotherapist I got walking again. I am trying to spend as much time as I can with my family, friends, puppies. I am eating good food and playing outside. Pain levels are really high, but I am coping and finding all the joy I can. I am very happy that I get a second chance to find as many silver linings as I can. Life is as always, more good than bad.

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #DevelopmentalDisability #DistractMe

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    Alyssa Dunn
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    ·
    @alyssadunn2651
    February 22, 2023
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    Mass cell flare up

    Last thursday I woke up covered in hives, we went to urgent care where i was given steroids. The next day it had gotten so bad I was throwing up and couldn’t get up and we went to the ER. They’re coming back as of this morning and I have no idea what is causing this or what to do, does anyone have any advice for mass cell flare up’s? #MastCellActivationDisorder

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