Tryptasemia & Co-Morbidities

PXL 20220102 214212000As mentioned in a previous article, vaccines can be tough on people with Hereditary Alpha Tryptasemia Syndrome. The Moderna booster for COVID-19 was no exception. Bottom line: 2 sleepless nights, and the day between them was not too bad.

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, 

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.

PXL 20210828 181707828Despite 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.

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.

PXL 20210728 175148894PORTRAITVacationing-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.

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.

Today the doctor who applied for the ICD-10 code announced that is it that it is official!

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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!

IMG 20200924 2100542Florida 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.

Screenshot 20210209 121224With 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.