Tryptasemia & Co-Morbidities

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.

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.

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.

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 20210131 023717147Every domain has its best (most up-to-date, valuable for patients) literature; for Hereditary Alpha Tryptasemia Syndrome (HATS) they're usually peer-reviewed journal articles, videos from conferences, etc. This annotated bibliography is prioritized in date order; with a newer disorder, having the newest research from the field is critical.

For patient stories, see Faces of Tryptasemia.

June 4, 2021

June is Lipedema Awareness month. On June 1, I recorded a video for Lipooedema Friends International--not about the disease, but about something that brings me joy in life, writing. Now, I'll share a few things that are challenging about lipedema.

  • Today, as for many days, I woke up with significant lower back pain. Lipedema fat is painful fat. 
  • I get tired more easily than I feel like I ought to. Of course, my dysautonomia causes that, too. And if you look at the side effects of my medications, you'll see that quite a few of them have drowsiness listed.

Screenshot 20210301 120559March 7, 2021

Yesterday was World Lymphedema Day. And March is Lymphedema Awareness Month. Our first exposure to lipedema came at The Mastocytosis Society's 2019 Annual Conference. I've had a friend with lymphedema (also spelled lymphoedema), secondary to cancer, for more than a decade, but I had no idea I could be experiencing the same thing. 

 
A few points from that and other conferences:
  • Lipedema is a lymphatic disorder, at times hereditary
  • It tends to be bilateral, whereas lymphedema is often unilateral if it is caused by damage to one set of lymph nodes
  • Lipedema, if untreated, can progress into lymphedema
  • Lipedema is at times a comorbidity to mast cell disorders, such as Mastocytosis, Mast Cell Activation Syndrome and Hereditary Alpha Tryptasemia Syndrome (HATS). It is unknown how they are correlated.
Lipedema causes me daily pain, despite medication. It also takes up an hour of each day, while I use a machine for lymphatic decongestion. I also practice swimming, recumbent biking, rebounding on a mini-trampoline, and wearing graduated compression.
 
Two Facebook groups I've enjoyed are

Screenshot 20210123 2255143I’ve known for months that Frugal Black Thumb Gardening's roses needed a trim. Besides looking like a mess, they were impinging on my patient’s neighbor’s yard. One bush had been overtaken with blue wildflowers.

Getting them back under control was going to be more than a thorn in my side. 🆕 3/31/2021 See UPDATE at the end.

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!

PXL 20210117 021127046Every medical disease and disorder is, no doubt, considering the specific impacts of COVID-19 to their population. Did you know that a drug commonly used in the Hereditary Alpha Tryptasemia Syndrome (HATS), Mastocytosis, and mast cell disorder populations has shown tentative antiviral effects? And have you or anyone you know with HATS tested positive for COVID-19?

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. 

tryptasemia logoWhen you have a mystery illness, it's hard enough to get diagnosed with the recognizable disorders. It's important to remember: often, doctors only diagnose disorders they're familiar with.

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