Support

We have a small team of people dedicated to supporting patients with MCAS and anyone who thinks they may have MCAS. We will expand this team and their resources over time in response to patients’ requests and their experiences.

Patients and their Families

 If you have a MCAS diagnosis or suspect that you have MCAS and are in need of help or advice, please email us and one of the team will be able to help you. Alternatively call us on 07733197360 and someone will be able to talk to you.

We have a general FB support group, if you apply please check your FB messenger in box or alternatively contact us using the button below.

MCA UK Support

If you are a parent with a child with suspected MCAS get in touch to join our parents support group.

 

MCA for UK Parents

If you would like us to call you please include your telephone number.

If you are a family member we would like to help you too.

Get in touch

Doctors and Researchers

We hope to be able to support doctors and researchers with an interest in MCAS or those that suspect they may have a patient with MCAS. We will be happy to discuss any ideas or initiatives that require support or funding.

Get in touch

Resources

We have published a small brochure that explains the aims of Mast Cell Action and the needs of the MCAS community.

You can read and download it here.

Download PDF

MCAS Patient Data and Documents

Here is a list of documents that UK patients may find helpful in understanding MCAS and practical advice for seeking a diagnosis and treatment.

  • Direct PDF download

  • Pay to view

  • Free to view

The 2011 consensus diagnostic criteria for MCAS - a one page to print out for a doc

Definitions, Criteria and Global Classification of Mast Cell Disorders with Special Reference to Mast Cell Activation Syndromes: A Consensus Proposal Peter Valent, Cem Akin, Michel Arock , Knut Brockow, Joseph H. Butterfield, Melody C. Carter, Mariana Castells, Luis Escribano, Karin Hartmann, Philip Lieberman, Boguslaw Nedoszytko , Alberto Orfao, Lawrence B. Schwartz, Karl Sotlar, Wolfgang R. Sperr, Massimo Triggiani, Rudolf Valenta, Hans-Peter Horny, Dean D. Metcalfe.

13.02.2018

Bibliography of MCAS papers

An easy to use summary of key MCAS papers, with hypertext links to the publications

12.02.2018

"New" tests for MCAS available in the UK

Print a copy and discuss the tests with your doctor, note a clinical suspicion based on symptoms is key, these tests can support a diagnosis,but a positive does not prove its MCAS and a negative does not discount MCAS. Nonetheless they are very important in providing support to a diagnosis and better defining the MCAS patient community.

14.08.2017

Info on Recent International Disease Code (ICD10) codification of MCAS

The coding of MCAS into the IDC 10 (American version) is n important step in gaining better recognition of MCAS

02.12.2016

Useful MCAS Research papers
and Videos

The links are from a range of sources, some are free open source documents, and others you can only read the abstracts and need to purchase them.

  • Direct PDF download

  • Pay to view

  • Free to view

Diagnosis

Serum mast cell tryptase measurements: Sensitivity and specificity for a diagnosis of anaphylaxis in emergency department patients with shock or hypoxaemia

Francis A, Fatovich DM, Aren. Serum mast cell tryptase measurements: Sensitivity and specificity for a diagnosis of anaphylaxis in emergency department patients with shock or hypoxaemia. Emerg Med Australas. 2017 Nov 2.

01.11.2017

Mast cell activation syndromes

Akin C. Mast cell activation syndromes. J Allergy Clin Immunol. 2017 Aug;140(2):349-355. PMID: 28780942 DOI: 10.1016/j.jaci.2017.06.007

09.08.2017

Characterization of Mast Cell Activation Syndrome

Mast cell activation syndrome (MCAS), a recently recognized nonneoplastic mast cell disease driving chronic multisystem inflammation and allergy, appears prevalent and thus important. We report the first systematic characterization of a large MCAS population.

12.03.2017

Mast Cells, Mastocytosis, and Related Disorders

Theoharides TC, Valent P, Akin C. Mast Cells, Mastocytosis, and Related Disorders. N Engl J Med. 2015;373(2):163-72.

21.11.2016

Utilities of Various Mast Cell Mediators in Diagnosing Mast Cell Activation Syndrome

Nicolas Zenker and Lawrence B Afrin,Utilities of Various Mast Cell Mediators in Diagnosing Mast Cell Activation Syndrome Blood 2015 126:5174

01.08.2015

Mast Cells, Mastocytosis, and Related Disorders

Theoharides TC, Valent P, Akin C. Mast Cells, Mastocytosis, and Related Disorders. N Engl J Med. 2015;373(2):163-72.

01.07.2015

Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis

Lawrence B Afrin, Zhuang Wan and Elizabeth G Hill Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis Blood 2013 122:5240;

01.08.2013
Treatment

A Practical Guide for Treatment of Pain in Patients with Systemic Mast Cell Activation Disease

Wirz S, Molderings GJ. A Practical Guide for Treatment of Pain in Patients with Systemic Mast Cell Activation Disease. Pain Physician. 2017 Sep;20(6):E849-E861.

01.09.2017

Pharmacological treatment options for mast cell activation

Molderings GJ, Haenisch B, Brettner S et al. Pharmacological treatment options for mast cell activation. Naunyn Schmiedebergs Arch Pharmacol. 2016 Jul;389(7):671-94

01.04.2016

Utility of Continuous Diphenhydramine Infusion in Severe Mast Cell Activation Syndrome

Lawrence B Afrin; Utility of Continuous Diphenhydramine Infusion in Severe Mast Cell Activation Syndrome; Blood 2015 126:5194

01.11.2015

Utility of Continuous Diphenhydramine Infusion in Severe Mast Cell Activation Syndrome

Lawrence B Afrin; Utility of Continuous Diphenhydramine Infusion in Severe Mast Cell Activation Syndrome; Blood 2015 126:5194

01.11.2015

H1-antihistamines for primary mast cell activation syndromes: a systematic review

4 Nurmatov UB, Rhatigan E, Simons FE, Sheikh A. H1-antihistamines for primary mast cell activation syndromes: a systematic review. Allergy. 2015;70(9):1052-61.

01.07.2015

The presentation, diagnosis and treatment of mast cell activation syndrome

.2. Afrin LD. 2013 Nova Science Publishers, Mast Cells: Phenotypic Features, Biological Functions and Role in Immunity. Chapters. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome

01.11.2013

Intravenous infusion of ascorbic acid decreases serum histamine concentrations in patients with allergic and non-allergic diseases

Hagel AF, Layritz CM, Hagel WH, et al. Intravenous infusion of ascorbic acid decreases serum histamine concentrations in patients with allergic and non-allergic diseases. Naunyn Schmiedebergs Arch Pharmacol. 2013 Sep;386(9):789-93.

01.09.2013
Genetics

Comparative analysis of mutation of tyrosine kinase kit in mast cells from patients with systemic mast cell activation syndrome and healthy subjects.

Molderings GJ, Meis K, Kolck UW et al. Comparative analysis of mutation of tyrosine kinase kit in mast cells from patients with systemic mast cell activation syndrome and healthy subjects. Immunogenetics. 2010 Dec;62(11-12):721-7.

21.11.2016

NIH Video , scientists uncover genetic explanation for frustrating syndrome

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms.Most, but not all, people who experience these diverse symptoms have elevated levels of tryptase

17.10.2016

Elevated basal serum tryptase identifies a multisystem disorder

JJ Lyons et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics DOI: 10.1038/ng.3696 (2016).

01.10.2016

Transgenerational transmission of systemic mast cell activation disease-genetic and epigenetic features

Molderings GJ. Transgenerational transmission of systemic mast cell activation disease-genetic and epigenetic features. Transl Res. 2016 Aug;174:86-97

10.08.2016

The genetic basis of mast cell activation disease - looking through a glass darkly

Molderings GJ. The genetic basis of mast cell activation disease - looking through a glass darkly. Crit Rev Oncol Hematol. 2015 Feb;93(2):75-89.

10.02.2015

Mendelian inheritance of elevated serum tryptase associated with atopy and connective tissue abnormalities

Lyons JJ, Sun G, Stone KD, et al. Mendelian inheritance of elevated serum tryptase associated with atopy and connective tissue abnormalities. J Allergy Clin Immunol. 2014 May;133(5):1471-4 .

15.05.2014

Evidence for contribution of epigenetic mechanisms in the pathogenesis of systemic mast cell activation disease

Haenisch B, Fröhlich H, Herms S, Molderings GJ. Evidence for contribution of epigenetic mechanisms in the pathogenesis of systemic mast cell activation disease. Immunogenetics. 2014 May;66(5):287-97.

10.05.2014
Comorbidities

Mast cell disorders in Ehlers-Danlos syndrome

This report reviews basic biology of mast cells and mast cell activation as well as recent research efforts, which implicate a role of MC dysregulation beyond atopic disorders and in a cluster of Ehlers-Danlos Syndromes, non-IGE mediated hypersensitivity disorders, and dysautonomia.

11.03.2017

Cardiovascular symptoms in patients with systemic mast cell activation disease.

Kolck UW, Haenisch B, Molderings GJ. Cardiovascular symptoms in patients with systemic mast cell activation disease. Transl Res. 2016 Aug;174:23-32.

01.08.2016

Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.

Afrin LB, Pöhlau D, Raithel M et al. Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases. Brain Behav Immun. 2015 Nov;50:314-21.

01.07.2015

Mast cell activation syndromes presenting as anaphylaxis

3 Akin C . Mast cell activation syndromes presenting as anaphylaxis. Immunol Allergy Clin North Am. 2015 May;35(2):277-85.

01.05.2015

A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome

Cheung I, Vadas P. A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome. Journal of Allergy and Clinical Immunology. Volume 135, Issue 2, AB65.

01.02.2015

Mast cell activation disorders presenting with cerebral vasospasm-related symptoms: A “Kounis-like” syndrome

6 González-de-Olano D, Alvarez-Twose I, Matito A. Mast cell activation disorders presenting with cerebral vasospasm-related symptoms: A “Kounis-like” syndrome. Int J Cardiol. 2011 Jul 15;150(2):210-1.

01.07.2011

New aspects of liver abnormalities as part of the systemic mast cell activation syndrome

Alfter K, von Kügelgen I, Haenisch B et al. New aspects of liver abnormalities as part of the systemic mast cell activation syndrome. Liver Int. 2009 Feb;29(2):181-6.

01.02.2009
Tests

Determination of plasma heparin level improves identification of systemic mast cell activation disease.

Vysniauskaite M, Hertfelder HJ, Oldenburg J et al. Determination of plasma heparin level improves identification of systemic mast cell activation disease. PLoS One. 2015 Apr 24;10.4.

01.04.2015

Prostaglandin D2-supplemented “functional eicosanoid testing and typing” assay with peripheral blood leukocytes as a new tool in the diagnosis of systemic mast cell activation disease: an explorative diagnostic study

Ravi A, Butterfield J, Weiler CR. Mast cell activation syndrome: improved identification by combined determinations of serum tryptase and 24-hour urine 11β-prostaglandin2α. J Allergy Clin Immunol Pract. 2014 Nov-Dec;2(6):775-8.

01.11.2014

Mast cell activation syndrome: improved identification by combined determinations of serum tryptase and 24-hour urine 11β-prostaglandin2α.

Ravi A, Butterfield J, Weiler CR. Mast cell activation syndrome: improved identification by combined determinations of serum tryptase and 24-hour urine 11β-prostaglandin2α. J Allergy Clin Immunol Pract. 2014 Nov-Dec;2(6):775-8.

01.11.2014

Mast cell activation syndrome (MCAS) diagnosed using double-balloon enteroscopy

Mönkemüller K, Kassalik M, Baraksei D, Mast cell activation syndrome (MCAS) diagnosed using double-balloon enteroscopy. Endoscopy. 2012;44 Suppl 2 UCTN:E72-3

14.06.2012
Informative Videos on MCAS

Elevated Tryptase Associated With Atopy and Connective Tissue Abnormalities"

In this interview, JACI Associate Editor Dr. Deborah Meyers talks to Dr. Joshua Milner about his article "Mendelian Inheritance Of Elevated Tryptase Associated With Atopy and Connective Tissue Abnormalities"

12.02.2018

NIH Video , scientists uncover genetic explanation for frustrating syndrome

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms.Most, but not all, people who experience these diverse symptoms have elevated levels of tryptase

17.10.2016

Dr L Afrin Presents on MCAS to the EDS community

A comprehensive presentation covering the history of MCAS as well as presentation, diagnosis and treatment

08.06.2016

Prof Theoharides, Tufts Medical Center - "My mystery symptoms and mast cells"

A discussion with patients around some of the more unusual triggers and symptoms of MCAS

08.01.2015

Dr Castells, MCAS symptoms and presentation

Dr. Maria Castells of Brigham & Women's Hospital lectures on mast cell activation syndrome at the CSF Greater Metropolitan Washington Area Chapter meeting on March 19, 2014.

07.03.2014

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