💉 Mast Cell Activation Disorder | Diagnosis Discussion ⚕🗣

By Adem Lewis / in , , , , , , , , , , , , , , , , , , /

Hi y’all! I’m Jaquie from chronically Jaquie and this is another video in my diagnosis discussion series. In this video. I’m going to further discuss my math cell activation disorder diagnosis, but before I continue Please remember that everybody’s journey with chronic illness is different, and I’m gonna be sharing my personal experiences Which may vary from yours, or someone you know. Also, be sure to check out the description for the other videos in my diagnosis discussion series and helpful links. Let me explain a little bit about what mast cells are, they are master regulators of our immune system and found in every tissue of our body they play a big role in inflammatory and allergy responses. Mast cell activation disorder is an immunological condition in which the body’s mast cells inappropriately and excessively release chemical mediators like histamine this results in a range of chronic symptoms some of which include typical allergy related issues such as Itching, rashes, hives, swelling, throat tightness, and flushing. more extreme effects include near anaphylaxis and full-blown anaphylaxis But mast cell symptoms are not just secluded to what one would typically think of as allergy related issues. It can include GI distress headaches, inflammation, body aches, bone pain, fatigue, and more. Mast cell is a very complex condition that goes beyond allergy related issues, and can affect other systems of the body – such as neurologic gastric, respiratory, and so on. My main symptoms are itching, rashes, inflammation, and anaphylaxis. With this condition mast cells can deranulate at random causing issues with no warning whatsoever. One of the most frustrating things for me personally is spontaneously going into reaction or full-blown anaphylaxis. This is called idiopathic anaphylaxis meaning it has no known cause and it can be really scary, because with no known trigger, It’s not very preventable and more often than not I have reactions that are unprovoked rather than one with a known cause. However, I do have some known triggers no food allergies, but many environmental allergies. I’m basically allergic to nature also cigar and cigarette smoke and some strong scents like perfume But not every strong scent will set me off so it varies in that aspect. Part of my treatment is avoiding all of these triggers to help with this. I have a variety of masks that I occasionally wear to assist with filtering my allergens and sensitivities. For example, if I am surrounded by my environmental allergens or somebody is smoking in an unavoidable area, I’ll put on the mask, as an extra layer of protection. The masks I have are not foolproof, but we use it as an extra precaution to help keep me safe. I also take H1 and H2 blockers which are histamine blockers and mast cell stabilizers such as Cromolyn. I take other medications to help combat symptoms such as IV benadryl that I administer through my central line during severe Reactions in acute anaphylaxis my central line is a chest port that gives me intravenous access. IV benadryl is the only thing fast-acting and potent enough to hopefully abort my severe reactions And I never know when I’m going to have an attack so my port is accessed 24/7. I also have an emergency kit with my IV benadryl ready to go at all times But if the attack is too severe and the IV benadryl doesn’t work then I use an EpiPen, however, Epinephrine is extremely harsh on my body and with how often I go into anaphylaxis. It’s better to use the benadryl rather than epi, if possible another treatment. That’s proven to be very beneficial for my allergies and mast cell is something That’s actually used specifically for my immune system issues, Which makes sense because allergies and mast cells are closely tied into the immune system. So, my immune system does work very well at all, it has some very deficient parts and some very hyperactive Parts in the hyperactive parts of my immune system are actually what causes my math cells to go into overdrive, Resulting in my mass cell activation disorder. We are treating my immune system with something called IVIG Intravenous immunoglobulin it helps my immune system becomes stronger and regulate itself more effectively. It’s not a cure, But it helps and as my immune system has stabilized on the IVIG. My allergies and mast cell activation disorder has made improvements as well. There are different types of mast cell activation disorders. Mine is called mast cell activation syndrome. Another type is called systemic mastocytosis, but I had a bone marrow biopsy that ruled that type out. I also, did not deal with mast cell symptoms my entire life. I began struggling with mild issues when I hit puberty at age 15, And they became more severe when I was around age 20. I underwent testing that included blood work for histamine and tryptase my histamine came back elevated, But my tryptase was normal, a normal tryptase does not automatically rule out mass cell activation syndrome that is more indicative of systemic mastocytosis. I also did several 24-hour urine histamine tests which came back elevated all of that, as well as a Positive response to proper treatment is what got me my mast cell activation syndrome diagnosis at age 21. Currently there is no cure for mast cell activation disorder and it can be a very tricky condition to manage it is scary and unpredictable at times, especially with my idiopathic Anaphylaxis, which can honestly be life-threatening so I remain as proactive, careful, and prepared as possible. Managing it the best I can and finding ways to keep moving forward. I hope this video on my mast cell is helpful, and thank you so much for joining in on my diagnosis discussion series. (Music)

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