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SM presents with symptoms from skin lesions to fatigue that diminish everyday living, to organ damage that can reduce survival1–3
Mast cell-mediator symptoms in SM can be unpredictable and identifying the underlying disease often takes years. SM symptoms can be triggered by aspects of everyday life, including heat, stress, exercise and food, although these triggers vary considerably and are not always representative1
Explore a range of potential clinical consequences across multiple organ systems for patients with SM
Note: Not an exhaustive list of possible symptoms. The frequency and intensity of any given symptom may vary from person to person.
Common symptoms such as skin lesions, anaphylaxis and diarrhoea should raise suspicion of SM1,2,6
Download the symptom checklist to help you recognise the symptoms or features indicative of SM
Skin
Skin manifestations in ISM and Advanced SM
Reproduced with permission from ©DermNet www.dermnetnz.org 2025.
It is estimated that around 95% of ISM patients and around 50% of Advanced SM patients experience maculopapular skin lesions7*
Small monomorphic lesions often appear on the thighs or trunk of the body7
A wheal-and-flare reaction is induced by stroking lesions mechanically, e.g. with tongue spatula7
In the PRISM trial, 28% of patients with SM stated skin symptoms as their most bothersome symptom3†
Download the skin lesions leaflet to learn more
Blood cell abnormalities
Liver/spleen
Musculoskeletal
Systemic organ damage in Advanced SM
2
Consider further diagnostic workup in patients with persistent or unexplained symptoms, especially when accompanied by abnormal blood counts or suspected myeloid neoplasms6,8,9
Systemic
Neurocognitive
Systemic debilitating symptoms in all SM subtypes
Any patient living with SM can present with potentially severe symptoms, from brain fog and fatigue to life-threatening anaphylaxis, that diminish everyday quality of life:1-3
About 33% of patients living with SM experience anaphylaxis;1‡ it is commonly triggered by hymenoptera stings or may occur as unexplained or idiopathic anaphylaxis5
At least 60% of patients living with SM experience difficulty concentrating or bothersome fatigue1‡
The unpredictable onset of acute symptoms is a main reason that patients with mast cell diseases seek support1
*As described by the expert panel review of adult-onset mastocytosis (predominantly indolent population) in the Hartmann 2016 study.7
†Based on data from the EU PRISM Patient Survey on the impact of SM (N=540).3
‡Based on data from the Mast Cell Connect Registry (N=163) in the Jennings 2018 study.1
Characteristics of indolent systemic mastocytosis
Advanced systemic mastocytosis – important aspects in clinical practice
Recognising severe and recurrent instances of the common symptoms can help raise suspicion of SM, even within a concomitant diagnosis6
Initial screening upon suspicion can guide the need for next steps or referral
Screening following referral can help confirm or rule out the diagnosis
Learn about the impact of SM on patients' quality of life
References V
Jennings SV, et al. Immunol Allergy Clin North Am. 2018;38(3):505–525.
Pardanani A. Am J Hematol. 2023;98(7):1097–1116.
Triggiani M, et al. Clin Exp Allergy. 2025;55(9):784–794.
van Anrooij B, et al. Allergy. 2016;71(11):1585–1593.
Gülen T, et al. J Intern Med. 2016;279(3):211–228.
Valent P, et al. J Allergy Clin Immunol Pract. 2022;10(8):1999–2012.e6.
Hartmann K, et al. J Allergy Clin Immunol. 2016;137(1):35–45.
Rets A, George TI. Int J Lab Hematol. 2025. doi: 10.1111/ijlh.70011. Online ahead of print.
Schwaab J, et al. J Allergy Clin Immunol Pract. 2020;8(9):3121–3127.e1.
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