Mast Cell Disease

Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy.Image It would be amazing if people would take the time to understand, to learn what this disease does to a person.  Here…I’ll even give you a link…

  • Mast Cell Aware has pictures and is easily read and informative.  

It’s all so clear now, the mysterious symptoms that I endured over my lifetime.  You know the kind.  The ones the doctors shrug and say…hmm…I don’t know why you would have THAT and give you a pill.  Being adopted sure didn’t help matters since I had no family history to bring to the table.  Duh…I don’t know either..would be my answer.

What I did know was that from a very early age when life when wrong and traumas occurred these weird symptoms would appear.  Hives that covered my body and an itch so horrid a scrub brush didn’t even take the feeling away.  Looking back now, i see the pattern…so very obvious as I was getting sicker over the years.  Stress/food/trauma=hives, anaphylaxis, nausea, pain and on and on..

Unfortunately Mast Cells, which are so important and play a role in healing and immunity are not that well studied or understood.  Only in the past few years are they being studied and related to many serious diseases.  All of our connective tissue…all of it…has mast cells.  That means your skin, the lining of your organs your bones and many other sites.   When triggered they can, depending on which area is involved release over 200 various chemicals, the most known is histamine which presents in allergic type reactions.  If you look at your lungs, stomach, liver, spleen, each one has various other chemicals released and all cause different symptoms.

Part of this post is because I’m feeling really sick.  The other two parts are because Invisible illness’s should be brought out into the open..just as I previously mentioned about my books.  People need to know these things.  Understanding only comes with education.  The third part and perhaps the most important for me is Adoption Reform.

Adoptee’s need to know their medical history.  It would save lives and years of searching for the answers to mysterious symptoms.  If only i had the information before I was five decades old…I would have had a chance to save my organs that are now beginning to fail me due to mast cell damage.  My lungs, my liver, my GI system and now my kidneys all have damage and continuous involvement.  I could have put the puzzle pieces together had I known family history.  It’s only been in the last few years mostly because my mast cells went over the edge while in Reunion that the puzzle was solved.  I just kept on getting sicker and sicker and had labels that were thrown around just because the doc’s couldn’t figure things out.  Oh how I wish I had known.

Life has changed drastically,  It’s a loss of what could have been, what you thought life would be,  Another grieving process to endure.  One that although difficult to grasp I’m grateful to finally have the answers or at least the diagnosis.  Everyday is a challenge.  Every day is the unknown.  Will I crash today and need to epi?  Will I have to go to emerg yet again?  Can I go to the store without throwing up or having to run to the bathroom?  Will the pain ever ease enough to sleep?

Thank goodness for a spiritual practice that allows me to be in a place of acceptance.  A place that gives me space to just sit with the pain and let it go.  A place that lets me know there is a brand new 24hrs on its way.  It is another opportunity to educate so others don’t spend 50yrs wondering what’s wrong.  It’s an opportunity to understand what’s really important in my life.  Right now….that’s heading to the couch with medication in hand.

4 thoughts on “Mast Cell Disease

  1. I’m reading old posts- don’t mind me. I agree that medical records would be very helpful for adoptees. I’m not adopted, had all that medical information in front of me, and I didn’t see the MCAS in my family until well after I determined that I had it. I have two sisters- they are each allergic to a couple of foods. My mother had food sensitivities, my father has environmental allergies. I have cousins on both sides of my family with food allergies and sensitivities. I’ve had allergies – both typical and weird ones my whole life. And yet, when I suddenly got sicker, I had no idea it was allergy related. Even when I was told it was allergy related, I was skeptical, because I thought I knew what I was allergic to, and I was avoiding those foods. Of course, when skin tests revealed a whole new set, and I pulled those foods, I felt immediately better, and I needed no more convincing. I think the point I wanted to make is that even if you had had your medical records- they may not have thought that the fact they were hypermobile, and their face flushed red was important enough to put in there (even after my diagnosis, my mother didn’t think that her facial flushing could be like my facial flushing, her abdominal pain couldn’t be caused by foods, etc. It just wasn’t in her paradigm). Or, even if they had, you might not have seen the pattern until much later in life, like me. I think that sometimes we are so blind to what is in front of us, that we can walk right into it.

    • I agree to a point. Had I had genetic/medical information, I may have made different decisions growing up. Perhaps the puzzle could have been put together before the disease destroyed so much of my organs. There were genetic clues I didn’t have until I was 50 and by then I was already quite ill. It was downhill from there and slowly the pieces fell into the right places and I knew, just knew..what I was dealing with. My mast cells had taken over from stress and had taken me along, into the abyss. I crashed, physically and emotionally from the reunion process. Who knows…For adoptees its important in many ways to have any information, medical, heritage..anything. Friends have died because of lack of information. It should be everyones right to have access to this kind of data and so many other things, like birth certificates, but that’s another chapter. I fought for diagnosis, for my family. For years I hated going to doctors..they always asked about family history…I had none. I wish I had known sooner. I am “later in life”… six decades later… and unfortunately, now its more about quality not quantity.

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