The Mastocytosis Chronicles – Summer 2017

Letter and Updates from the Chair, July 2017 

Early Summer Greetings!

Here within TMS, there is so much going on that I hardly know where to start. The new website has been launched and running now for over four months, and we are delighted with the results thanks to the design team of Russell Hirshon and Shannon Flynn at Ministers of Design […]

Read More >


Volunteers Needed!

If you would like to volunteer for TMS, first please look over the many opportunities which are currently available and see if any of them match the gifts which you have to share […]

Read More >


Diagnostic Workup for Advanced Forms of Mastocytosis

Wolfgang Sperr, MD, and Celalettin Ustun, MD

Mastocytosis denotes a heterogeneous group of disorders characterized by abnormal growth and accumulation of mast cells (MCs) that has a variable prognosis and course of disease. In contrast to adults, childhood mastocytosis often resolves spontaneously before adolescence or young adulthood. Most systemic mastocytosis (SM) variants diagnosed in adults […]

Read More >


Mastocytosis – Where are We Now?

Cem Akin, MD, PhD, and Mariana Castells, MD, PhD

This is an article posted on the World Allergy Organization website and updated March 2017.

View Expert Information Here > (scroll down for the link to the article)

We can be the vehicles of our own message by sharing our experiences with mast cell disease with researchers and healthcare professionals in the biotech world

On Rare Disease Day February 2017, we were honored to be invited to speak at Blueprint Medicines in Cambridge, MA to help employees and researchers there learn more about Mastocytosis […]

Read More >


The Stony Brook Chronic Illness Project-Patient Survey 

Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness. The knowledge gained from this study will help scientists and physicians improve care and develop effective treatments. This anonymous, online questionnaire welcomes any adult who has a rare or non-rare chronic illness to participate. The questionnaire is voluntary and takes approximately 30 to 60 minutes to complete […]

Read More >


Anaphylaxis threatens patients with systemic mastocytosis: A new study separates patients at high risk of anaphylaxis from those at low risk, a help in care

Anaphylaxis is a sudden, severe hypersensitivity reaction resulting from excessive release of mast cell mediators. Symptoms and signs often involve the skin. A fatal reaction may occur when the airways become obstructed or the cardiovascular system fails […]

Read More >


Welcome to The Poet’s Corner!

We would like to give members of our mast cell disorder community an opportunity to share their poems. If you would like to submit a poem, please email it to secretary@tmsforacure.org. Ode to a Mast Cell Flare by Kathy Bell, 2016 […]

Read More >

Emergency Room Guide

DOWNLOAD PDF >