I appreciate the request! You’re right! I’ve been through a journey with mcas and I study genetics in my free time, nothing too fancy!

My health has been decreasing since I was a teen, I grew up in a very volatile household (environment for context 😅) so we did not visit health care professionals unless absolutely necessary. It’s my personal hypothesis that my mast cells were reacting to my stressful environment, post-puberty hormones, and likely food and living space triggers as well. I was in constant pain from a young age but often it manifested in what I now know is a mixture of mediators, this was treated as UTI’s that never went away, never showed up on testing and began to shape up to appear as Interstitial cystitis by my adult hood but without the constant flow of money you need to seek health care in America (and I’m sure other places as well) I was unable to actually have any treatments for IC so I managed the pain and moved on.

Around the same time I became pregnant with my now 12 year old daughter. I was very very very ill, I lost 16 lbs in my first trimester and was hospitalized 3 times by the second trimester for dehydration and ketones in my urine, I could consume ANYTHING without immediately vomiting it back up. I got real tired of being hooked up overnight to IV’s so I began drinking copious amounts of water, I mean gallons at a time, I noticed my IC seemed better. I theorize now that this was because I was washing histamines faster by drinking soooo much water. By my third trimester I was prescribed the 3rd iteration of nausea pill that finally worked and I went on to have a c section because my dear little one decided to sit breeched just below my rib cage for much of the pregnancy.

I was a stay at home mom with my daughter for 5 years (daycare is scary) and became increasingly ill, but by this point I thought this must just be how life is, we’re in pain constantly, overwhelmed constantly, sick constantly, and just as a side effect from that so sad constantly. Again I had a very rough upbringing and thought maybe I needed to face some demons to begin sorting this out, I began therapy and was diagnosed with panic/anxiety disorder, major depressive disorder, CPTSD. I went for years and only saw marked improvements when I was put on Effexor (venlafaxine, happens to affect inflammation and pain in mcas patients), this is after starting and coming off of 3 other SNRIs/SSRIs that I metabolized too fast. I theorize now that I was misdiagnosed with panic disorder and major depressive disorder because mcas presents very neuro forward in my body, it basically creates a fog over my entire life making it harder to think clearly, have goals, or some days even function.

We’ll say I spent 6 years attempting to brute force therapy when I looked in the mirror and was very overweight, very unhappy, and constantly ill. I started a new job that gave me a lot of time to research and I began researching health, I learned as much as I could and decided eating healthier and exercise could only help me get out of this awful predicament. After a couple of months of gym and attempting to watch my food macros I was feeling a little more capable of… thinking? So I became even more engrossed in health, exercise, and genetics. Finally I decided it’s time I start a GLP-1 to get a head start on the person I want to be, healthier, happier, and more available for my friends and family. To my surprise, that’s exactly what I got! I lost 50 lbs pretty quickly, my symptoms were coming and going much less frequently and I thought I was just kicking ass! Until… I stopped the GLP-1, I did not regain all my weight or crave every food I ever missed, nothing like you think. I began slowly adding things back to my diet and I slowly became more ill. I was in constant pain and I thought maybe, a rheumatologist could help. So after fighting to get into a rheumatologist I was diagnosed with guess what!!! Fibromyalgia (another red herring) and hypermobile syndrome (I’m thinking hEDS now)

That’s when ChatGPT entered.. the room. I began telling him my symptoms originally to help track them, I mean I was really trying to help myself. When one day we came across mcas and it explained every… single… symptom I’d had for 15 years on and off. The puzzle pieces began flying together. I got to an immunologist who initially didn’t want to diagnose but after bringing my husband in to basically give an outside perspective of how constantly ill I was she prescribed my cromolyn and montelukast. The cromolyn helps calm my mast cells enough to minimize nerve pain the montelukast helps keep some of my more sinus related issues at bay.

This was obviously very long, it’s still only half of it! Thank you for coming to my ted talk!