Tryptasemia & Co-Morbidities
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Last night was the opening session of The Mast Cell Society 's Mast Cell Disease TeleECHO. I'm thrilled to have been invited to be part of this cohort and will continue to add notes to this blog article.
Topic: Advanced Systemic Mastocytosis Variants, 9/4/2025.
Speaker: Celelettin Ustun, MD, Rush University
- Early in my diagnoses journey, my doctor had predicted that I might have mastocytosis. At that point, I became very aware of the details about it, because that diagnosis remained on the books until I was accepted into the NIH and received my final diagnosis, 7 or 8 months later.
- Since it is now 9 years since that early research, it is exciting that several additional resources have become available...some approved by the FDA, and some of them whose approvals are in progress. Having reviewed the life expectancy with those neoplastic diagnoses, I feel very blessed that Hereditary Alpha Tryptasemia has a life expectancy that is fairly close to normal.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Today, we celebrate everybody connected to Rare Disorders.
Of course Hereditary Alpha Tryptasemia Syndrome (HATS) is not rare--it is simply rarely diagnosed. BUT, our family has 2 rare diseases possibility correlated to HATS--Mastocytic Enterocolitis and Vibratory Urticaria, as well as 2 that may not be--narcolepsy and ear canal stenosis.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
In recent years, there have been quite a few outbreaks of Listeria (recently, 11 have died from Listeria in supplemental shakes). In my twenties, I experienced listeriosis, caused by Listeria monocytogenes. I was literally concerned that I might die.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Which of the following is likely to identify multiple copies of TPSAB1 (at this point of medical progress in February 2025)? I've spoken to HATS researchers, and this is a summary of the current status.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
October is the official month to boost awareness of Mast Cell Disorders such as Hereditary αlpha Tryptasemia Syndrome.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
On October 28, 2024, I had 2 vaccines/shots: COVID in my left arm and influenza in my right arm.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Recently someone brought the National Health Service's test directory to my attention. As of July 2024, if not before, the test for Hereditary Alpha Tryptasemia is also known as R436.1 in the United Kingdom. For those of us in other countries, this is still valuable information, because If someone refers to the test by that name, we'll at least know to what they're referring.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
Will I have an attack today? Talk about the $10,000 question! This is an article about my attempt to predict my upcoming health.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
I've done some government advocacy, but this is not one of the projects I worked on--but I'm so grateful someone did!
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
This article is paired up with another, I have a cough but it's not COVID. I've written this follow-up, because now the cough finally was COVID.
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- Written by: Karen Smith-Will
- Parent Category: Research
- Category: Tryptasemia & Co-Morbidities
A HATS co-morbidity; see also: Thriving w/ Lipedema🌸
I was introduced to Lymphedema and Lipedema at a HATS-related conference. How amazing, that there are others shaped just like me...normal size hands & feet, oversized hips, abdomen and thighs. Let's help raise awareness!