Just starting to build this page. Come again for more information and resources as it develops.
”In addition to having higher blood tryptase levels, individuals with more alpha tryptase copies also report more shared symptoms. These symptoms can be associated with multiple organ systems and may be hard to explain. These symptoms may include allergic-like symptoms such as skin itching, flushing, hives, and even anaphylaxis; gastrointestinal (GI) symptoms such as bloating, abdominal pain, diarrhea and/or constipation (frequently diagnosed as irritable bowel syndrome or IBS), heartburn, reflux, and difficulty swallowing; connective tissue symptoms such as hypermobile joints and scoliosis; cardiac symptoms such as a racing or pounding heartbeat or blood pressure swings sometimes with fainting; as well as anxiety, depression, chronic pain, panic attacks, and others. These patients may find that others in their family have similar or related symptoms, as this is a genetic syndrome. Others may have few if any symptoms—and would be said only to have the trait and not the syndrome associated with the trait. In cases such as these, a person may only find out because a relative was more severely affected with the syndrome.” NIH
Following you’ll find information and resources for people with Heredity Alpha Tryptasemia Syndrome, the new kid on the mast cell disorder block, and for those who care about them. I hope these resources will help you better understand the condition and how to treat it, and as a result, help you to lead a better life.
Since many patients with Heredity Alpha Tryptasemia Syndrome respond to medications that target mast cells and substances released by mast cells, some of the information you’ll find here was developed for people with Mastocytosis or Mast Cell Activation Syndrome.
The information and resources are organized according to the following sections so feel free to scroll down to find what you need:
Articles + Videos
Websites and Blogs
Elevated Tryptase (.com) - Genetic testing for duplications of the gene encoding alpha-tryptase (TPBSA1)
Hereditary Alpha Tryptasemia and Hereditary Alpha Tryptasemia Syndrome FAQ - NIH - National Institute of Allergy and Infectious Disease
Heredity Alpha Tryptasemia - The Mastocytosis Society
An Update on Tryptase Research at the NIH: Trypped Up By Tryptase - Milner (Video)
Hereditary Alpha Tryptasemia: Genotyping and Associated Clinical Features - Lyons. This article will be available on Pub Med on August 1, 2019
A Concise, Practical Guide to Diagnostic Assessment of Mast Cell Activation Disease - Afrin and Molderings