Tryptasemia & Co-Morbidities

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.

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 / 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.

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 7th day reaction to a pair of vaccines, shingles and pneumonia.

PXL 20201008 211537536

Note the following:

  • This patient has been diagnosed with shingles twice in the past (more than 5 years previously).
  • This patient has been diagnosed with pneumonia multiple times in the past (more than five years previously).

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.

tryptasemia logoBut my tryptase isn’t high--I'm looking right here at my LabCorp readout, and it says my tryptase is normal.”
In many (or even most) testing readouts, the ranges that are currently displayed for tryptase were often calibrated to test a different condition—mastocytosis--and are probably still considered relevant in that scenario.

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.

FB IMG 1585733990776This was first published on Facebook as a Public article.
I am going to break form and offer some learnings from the beginning, before I tell my story. First, people with Hereditary Alpha Tryptasemia Syndrome (#HATS) should always have a phone on their person.