Tryptasemia & Co-Morbidities

ashton_h20tinyI journalled the following during my first-ever trip to Colorado, back in January 2010, perched in the towering Rocky Mountains:

“I woke up dry this morning…slight headache, dry mouth, and—this I’m not used to—dry lower throat. It’s fascinating to listen to my biofeedback. We’re supposed to drink 4 cups of water with each meal and 3 bottles of water in between. I’ve been drinking a ton of water—compared to my normal intake—but I have to be honest with myself that I haven’t been drinking as much as I should. I drink some water every time I thought about it. But is that good enough?"

Nope.

A) My mind was not yet calibrated to how much H20 I needed in the Rockies' altitude, so I couldn't trust it. My body was probably crying out for water in little ways, but I just hadn’t learned how to listen.”

B) I am prone to altitude sickness (common in those with Hereditary Alpha Tryptasemia Syndrome, or HATS), but I didn't know it at that point.

C) I have vibratory urticaria (diagnosed by the National Institutes of Health, or the NIH) from the lengthy, cross-country flight; again, I didn't know it at that point.

I wonder if it's the same with my spiritual thirst? 

tryptasemia logoThis week, I had the opportunity to be one of the 15 people interviewed about the potential need for a mast cell treatment. It is too early for timelines; however, just the knowledge that researchers are targeting our needs is very encouraging. They are also collaborating with the National Institutes of Health.

tryptasemia logoMany people with Hereditary Alpha Tryptasemia Syndrome, or HATS, have struggled through years of doctors, specialists, tests, and medications already. Determining whether one has multiple copies of the TPSAB1 gene has become easier since 2018.

IMG 20200317 2005163*Or whatever the current pandemic may be.

As symptoms go, cough is relatively benign--until it's not. For those of us with not-fully-managed, chronic, or idiopathic cough, this appears to be a societal risk, from the perspective of anyone not "in the know." This article provides some options that have been beneficial for me.

Xander 2014

If you have recently discovered you have Hereditary Alpha Tryptasemia Syndrome, you're not alone. We're gradually adding faces and stories.

20170815 132146Several years ago, our family had the good fortune to visit Quebec, Canada. I wanted to climb Mont-Saint-Hilaire, especially because of the pegmatite(s) found there. (See our Morefield mine project; that mine follows a pegmatite in Amelia, Virginia.) Our family walked together regularly, so this hike should not have been excessive.

tryptasemia logoTryptasemia.com and Tryptasemia.org were created to help people find information about Hereditary Alpha Tryptasemia Syndrome quickly.

Photo of waspThis article was written in 2010, 8 years before I was confirmed genetically to have Hereditary Alplha Tryptasemia Syndrome. It was written as a business article, but it details the challenges I experienced before understanding the nature of my illness and how it impacted daily life.

tryptasemia logo

Hereditary Alpha Tryptasemia, or HAT, has also been called familial tryptasemia and hypertryptasemia. Here are a few important numbers to remember (updated 3/2023).