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. 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…http://mastcellaware.com/about.html
- 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.