Tryptasemia & Co-Morbidities
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
I 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?
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
This 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.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Many 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.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
*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.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
If you have recently discovered you have Hereditary Alpha Tryptasemia Syndrome, you're not alone. We're gradually adding faces and stories.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Several 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.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
This is the original published version of this story. An abridged version was published on Mast Cell Research as a winner in their October 2017 story contest. In March 2018, I was diagnosed genetically with Hereditary Alpha Tryptasemia Syndrome.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Tryptasemia.com and Tryptasemia.org were created to help people find information about Hereditary Alpha Tryptasemia Syndrome quickly.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
This 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.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Hereditary Alpha Tryptasemia, or HAT, has also been called familial tryptasemia and hypertryptasemia. Here are a few important numbers to remember (updated 3/2023).
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