Tryptasemia & Co-Morbidities
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
2025, February 28 Rare Disease Day
https://valutivity.com/index.php/research/53-tryptasemia-co-morbidities/380-rare-disease-day-2025
2022, November
We've updated the Faces of Tryptasemia HATS page with Nicole's new video.
2021, December
Per the Mast Cell Disease Society's December 31 email, the nonprofit has, among many other contributions,
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Despite my lengthy set of physical challenges, every doctor I have agrees that I should exercise. Biking could be another source of injuries for me, were it not for my recumbent bike.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
The following is a range of studies that have been beneficial for our families' Hereditary Alpha Tryptasemia Syndrome (HATS), co-morbidities, and other possible hereditary disorders.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Vacationing-while-having-HATS (Hereditary alpha Tryptasemia syndrome) is not for the faint of heart. The pitfalls can cause a challenge both during the vacation and beyond. It might even tempt one to never leave home.
Perfect strangers have been roped into helping me through dysautonomia in an airport, getting me settled after a fall, helping us get to a hospital in a foreign country for an allergic reaction, etc.
However, I love to travel—so thankfully, we’ve picked up a tip or 20 through the years.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
December 1, 2024
Lipedema's Invisible Toll
https://www.health.harvard.edu/diseases-and-conditions/lipedemas-invisible-toll?fbclid=IwY2xjawHCI3xleHRuA2FlbQIxMQABHdR3EtgnGL0MAtdzForHKPQZ855lDKjmY5896Nfeywh4tyikpbVL2UukAQ_aem_HKwAdsPrDDnVHoBzg9qeeg
July 22, 2021
Go check out Thriving with Lipedema. This blog describes living with lipedema, from a patient who also has HATS.
June 4, 2021
June is Lipedema Awareness month.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Today the doctor who applied for the ICD-10 code announced that is it that it is official!
D89.44
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Valutivity LLC is celebrating our 4th #RareDiseaseDay2021 virtually "at" the NIH on Monday, 3/1/2021. Last year, I attended #RDDNIH in person at the National Institutes of Health (NIH), met with my doctor at Building 10, and performed piano/vocal concerts at the NIH's Safra Lodge (for adult patients) and their Children's Inn. These events were very memorable, given their proximity to all of the COVID-19 closings.
We had rolled out Tryptasemia.com / Tryptasemia.org in preparation for #RareDiseaseDay2020. In the 12 months since then, we've amassed over 12,600 hits!
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Florida has it all... fabulous beaches, fun cities, copious freshwater rivers & streams...and mosquitoes. So when articles about rendering mosquitoes sterile appear, that may seem like a perfect solution. Those of us with Hereditary Alpha Tryptasemia syndrome (HATS), are particularly susceptible to insect bites, especially if they come from mosquitoes carrying Dengue Fever. But there are long-term ecological impacts to fragile ecosystems that must be considered, as well.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
With a title like this, one might expect entries like chapeau, fez or fedora. ;) Hereditary Alpha Tryptasemia Syndrome (HATS) encompasses quite a few terms not fully familiar to us, from the genetic and medical domains. Let us know if there are others we should add.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
These are stories from individuals who have been confirmed to have Hereditary Alpha Tryptasemia Syndrome, or HATS. If you are confirmed to have HATS and interested to share your story, please send a message on Contact Us.
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- Written by Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Hereditary Alpha Typtasemia Syndrome (HATS), as a published disorder, is in its infancy. No longitudinal, double-blind studies have been completed targeting treatments for HATS. In the meantime, treatments are generally borrowed from those used with Systematic Mastocytosis or other Mast Cell disorders.
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