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Mastocytosis frequently asked questions

These mastocytosis FAQs have been developed in response to recurring themes and common questions raised by patients and families over recent years.

Please note that the information provided here is general in nature and does not constitute, replace, or override medical advice. Individual circumstances vary, and your situation may require alternative management, investigation, or testing as determined by your treating clinician.

While TAMS cannot answer individualised medical questions, we can provide general information, resources, or referrals that may assist you further. If you have a general question about mast cell activation disorders that has not been addressed here, please contact us.

Understanding mastocytosis

Is mastocytosis a cancer?

Systemic mastocytosis (SM) is a rare myeloid neoplasm and may be considered a type of blood cancer. While rare advanced forms accounting for approximately 5 per cent of cases are more serious, may affect life expectancy and require specialised care, mastocytosis broadly is not typically described as cancer in patient or community information because are indolent, meaning they progress slowly or remain stable over time, and are managed very differently from other cancers.13,14

If it is not cancer, then why am I seeing that online?

SM has been classified in different ways over time, which can contribute to conflicting descriptions online. In earlier World Health Organization (WHO) classifications, mastocytosis was grouped with myeloproliferative neoplasms. In 2016, it was removed from this broader category and recognised as a distinct group of myeloid neoplasms because of its unique biology and highly variable clinical course. Current classifications continue to recognise SM as a myeloid neoplasm, although its behaviour, prognosis and management can differ substantially from cancers more familiar to the general public.

Specialists and their patients may also have different preferences for how to describe a diagnosis. Some use the term “cancer,” while others prefer “SM” or identify a specific variant, such as indolent SM or bone marrow SM. This inconsistency in language also appears online, depending on the age of the resources and the authors’ preferences.

Understanding your specific diagnosis and what it means for your health, monitoring, treatment and life planning is generally more important than the terminology used. We encourage patients to discuss their diagnosis with their specialist and, in day-to-day life, use any medically accurate terminology that feels comfortable to them.

Read more about mastocytosis.

Is mastocytosis an autoimmune disease?

Autoimmune diseases occur when the immune system mistakenly attacks the body’s own healthy tissues, such as in lupus, rheumatoid arthritis or type one diabetes. In contrast, mastocytosis arises from abnormal mast cell growth and behaviour, not from an immune system attack against the body.

Find out more information about what mastocytosis is.

How is mastocytosis different from mast cell activation syndrome (MCAS)?
Mastocytosis is a clonal mast cell disease involving mast cell proliferation in the skin or throughout the body. MCAS, by contrast, refers to abnormal mast cell activation with elevated mediators, and does not involve an increased number of mast cells.27

While patients with monoclonal MCAS (MMAS) may share some clonal features with mastocytosis, the diagnoses remain distinct.

It is also true that many symptoms and treatments overlap for non-advanced forms of mastocytosis and MCAS. However, it is important to understand which diagnosis you have, or which you are being assessed for, as confirmation of mastocytosis may result in different monitoring needs and additional eligibility for certain treatments.

If you are unsure which diagnosis applies to you, please discuss this with your treating specialist.

Can mastocytosis be misdiagnosed?
Mastocytosis and other mast cell activation disorders (MCADs) can present with a broad range of symptoms that overlap with many more common conditions.26 Because MCADs are rare, they are often diagnosed by exclusion, meaning clinicians may first rule out other possible causes of symptoms. In some cases, an initial or provisional diagnosis may be given while further testing and monitoring occurs.

Additionally, a different tentative MCAD diagnosis, such as an MCAS subtype like monoclonal MCAS, may be considered first if results are unclear or incomplete for a formal mastocytosis diagnosis.

If you are concerned that your diagnosis may not fully explain your symptoms, it is important to discuss this with your specialist.

I have been diagnosed with TMEP. Why is this diagnosis not listed here?

Telangiectasia macularis eruptiva perstans (TMEP) is an older diagnostic term that is now understood to fall within maculopapular cutaneous mastocytosis (MPCM), which is the current term used for this form of cutaneous mastocytosis.

This change in terminology does not reflect a change in how the condition is managed. Please continue to speak with your specialist about managing your current symptoms and any new or changing concerns.

For more information about recent updates to mastocytosis diagnostic terminology, including TMEP, please read our overview of the European Competency Network on Mastocytosis (ECNM) 2024 patient session.

Family planning and pregnancy

Is mastocytosis hereditary?
Most cases of mastocytosis are sporadic and not inherited. However, there are extremely rare instances of familial cases, suggesting a possible genetic predisposition.1

Note: Families with a history of inherited mastocytosis confirmed by haematologists or immunologists in Australia and Aotearoa New Zealand, who need further help are encouraged to have their doctors email TAMS if their specialist is seeking to connect them with a mastocytosis centre of excellence.

Can patients with mastocytosis have children?
People with mastocytosis can typically have children. Most individuals who live solely with mastocytosis have unaffected fertility, and pregnancy is usually safe with proper medical care. Many common mastocytosis medications can be used safely during pregnancy, but your specialist should always review treatment. While symptoms may change during pregnancy, most do not require significant management changes.2 A shared care plan between your specialist and obstetric team is recommended.3
Are there pre-implantation or family planning tests available for mastocytosis?
There are no routine pre-implantation genetic tests specifically for mastocytosis, as the condition is generally not inherited. Familial cases are rare and no established genetic marker would justify routine pre-implantation testing. In situations where there is a strong family history of mastocytosis, genetic counselling may be recommended to understand the risks.

In cases where mastocytosis occurs alongside hereditary alpha tryptasemia (HαT), it is important to note that HαT is an autosomal dominant trait, meaning there is a 50 per cent chance of passing it to a child if one parent carries the trait. However, HαT is a genetic trait and not a diagnostic criterion for mastocytosis. Additionally, many individuals with HαT, with or without mastocytosis, are not symptomatic.4,5

Talk to your specialist to establish if a genetic counselling referral is appropriate in your case.

Testing and specialists

Will I need regular tests or scans?
Patients with cutaneous mastocytosis may have routine pathology testing from time to time, but scans are not usually needed unless systemic disease is being investigated. In contrast, systemic mastocytosis generally requires ongoing monitoring, which may include scans of the liver, spleen or other internal organs. Depending on symptoms and subtype, monitoring may involve blood tests, bone marrow biopsies or various imaging studies.8

Your specialist will advise how often tests are needed based on your subtype and any related health conditions.

Is all the testing for Mastocytosis available in Australia and Aotearoa New Zealand?

To our knowledge, all verified testing, including blood tests and biopsy testing of skin or extracutaneous tissue (such as bone marrow or the gastrointestinal tract), can be collected in any region of both countries.

Supplementary testing for hereditary alpha tryptasemia (HαT) is also available locally and internationally, depending on your specialist’s preferred laboratory.

In some cases, special transport may need to be arranged by the receiving pathology provider. If you require details about available testing laboratories, please email us.

Where can I find specialist care for mastocytosis?

Mastocytosis is typically managed by a clinical immunologist or haematologist where necessary. Your general practitioner can refer you to an appropriate specialist. 

TAMS also maintains a state-by-state list of healthcare professionals familiar with mastocytosis in Australia and Aotearoa New Zealand which can be issued on request to individual patients or their carers. 

If you require a list of specialists in your region please email us.

Prognosis

Is mastocytosis fatal?
Mastocytosis is rarely fatal, however, the prognosis for mastocytosis depends on the subtype.

Cutaneous mastocytosis (CM) and indolent systemic mastocytosis (ISM) are generally not life-threatening and often manageable with appropriate treatment.20,21 In children, cutaneous forms usually improve or resolve with age.21,22

Advanced systemic mastocytosis (AdvSM), which includes aggressive systemic mastocytosis (ASM), systemic mastocytosis with associated haematological neoplasm (SM-AHN) and mast cell leukemia (MCL), can be life-limiting and require intensive medical intervention.21 Early diagnosis and regular monitoring are key to improving outcomes.

Please talk to your specialist to clearly establish your diagnosis, prognosis and care needs.

Is there a cure for mastocytosis?

There is currently no known cure for mastocytosis. However, many patients can manage their symptoms effectively with the right combination of medical treatment, trigger avoidance and supportive care.

Find out more information on current treatments.

Can children outgrow mastocytosis?
Many children with cutaneous mastocytosis (mastocytosis limited to the skin) see reduced symptoms or complete resolution by puberty. However, not all children outgrow the condition. If symptoms persist or become more severe, further evaluation may be needed to check for systemic involvement.21,22

Please talk to your child’s specialist promptly if their symptoms appear to be changing or worsening.

Medications

Do I need to be on avapritinib now that I have been diagnosed with mastocytosis?

Avapritinib (Ayvakit) is a tyrosine kinase inhibitor (TKI), a type of targeted medication that blocks specific signalling pathways involved in mast cell growth and survival. It works by inhibiting the KIT D816V mutation, which is commonly found in mastocytosis, thereby reducing mast cell burden in some patients. While this medication has shown substantial benefit in clinical trials, particularly in the United States, it is prescribed only for specific clinical situations, and it is not indicated or suitable for the management of mastocytosis in all cases.15

At present, avapritinib is not accessible in Australia for mastocytosis. This means most patients cannot begin treatment through primary pathways. For most people with non-advanced forms of mastocytosis, first-line care continues to focus on managing symptoms with supportive therapies, identifying triggers and monitoring over time.

If you have questions about TKIs available in Australia or are concerned about understanding your treatment options, please speak to your specialist.

Read more about medications. Our questions to ask your specialist resource may help you prepare a helpful discussion list.

I have been told by my specialist that I need medication that is not available in Australia. What should I do?

Access depends on the medication. Some medicines may be available through compounded pharmacies, while others may only be accessible through the Personal Importation Scheme or the Special Access Scheme.

Please speak to your specialist, as they are best placed to advise you on suitable access pathways in the first instance. However, if they are unfamiliar with the available options, TAMS may be able to help. You or your specialist are welcome to email us noting the name of the medication, and we will provide any useful information available to us. Please kindly do not include dosage details in your message.

Do I need to carry an epinephrine auto-injector (EpiPen/AnaPen) with mastocytosis?

Many patients with mastocytosis are advised to carry an epinephrine auto-injector, particularly those with a history of anaphylaxis or increased risk of severe reactions. However, carrying an auto-injector without medical advice is not recommended. Improper use of this medication will not relieve non-anaphylactic symptoms and may place strain on the heart if used unnecessarily.

If you believe you may need an epinephrine auto-injector, speak with your treating specialist so they can assess your risk and provide appropriate prescriptions, guidance and training. If you already have an auto-injector and would like more education on how to use it please visit ASCIA’s anaphylaxis training page.

Daily life with mastocytosis

Can I work with mastocytosis?
Yes, many patients with mastocytosis can work. Your ability to work may depend on your symptoms, triggers and job type. Some patients may need adjustments, like flexible hours or avoiding certain exposures. Employers must provide reasonable accommodations to support individuals with chronic illnesses in Australia and Aotearoa New Zealand.29,30
Can I travel with mastocytosis?

Many patients with mastocytosis travel safely with preparation.9,10 It’s important to carry your medications, emergency action plan and any autoinjectors with you at all times. Patients should also travel with a medical letter, especially when flying or travelling overseas.11, 12

For more information on what information should be in a medical letter please visit the Department of Health, Disability and Ageing – Office of Drug Control or New Zealand Customs Service – Te Mana Ārai o Aotearoa.

Do I have to avoid exercise with mastocytosis?
Most patients with mastocytosis can safely exercise; with regular movement typically seen to support overall wellbeing. However, some patients find that intense or prolonged exercise can trigger symptoms, such as flushing, fatigue, or even allergic-type reactions.16

If exercise has triggered symptoms before, talk to your specialist about how to exercise safely.

Do I need a special diet with mastocytosis?

There is no recommended diet solely for mastocytosis, and most patients do not need to or benefit from restricting their diet.28

Some individuals may try low-histamine or low-FODMAP diets under medical supervision, but there is no evidence of their benefits for mastocytosis in general. Long-term restrictive diets without cause significant risks, including for nutritional deficiencies.

If you find that certain foods trigger their symptoms, such as flushing, stomach upset, or fatigue this may be a secondary health issue such as histamine intolerance. Please always discuss any food reactions with your doctor to ensure allergies and other conditions, such as celiac, are ruled out.

To find a dietician who can help you with managing any confirmed food issues, or to generally improve your nutrition, visit Dietitians Australia or Dietitians NZ.

How can I explain mastocytosis to others (family, school, workplace, adolescent and adult settings)?

Mastocytosis is a rare condition where the body makes too many mast cells. These cells release chemicals that can cause symptoms including itching, rashes, flushing, fatigue, brain fog, stomach issues, or sometimes life-threatening anaphylaxis.27

It’s not contagious or typically inherited, but in adult cases it is chronic, and requires life-long management. With good medical care and support from their community, many mastocytosis patients can manage their symptoms and participate fully in school, work and daily life.

Read more about mastocytosis.

Note: When living with mastocytosis, letting others know about your triggers, what to do in an emergency, and any medications (like an EpiPen/AnaPen) you carry, can help them support you. In addition to TAMS’ 2025 brochure, which provides an introductory overview of mast cell activation disorders, including mastocytosis, you may also find these MCAD resources helpful. This page includes educational webinars, infographics and information sheets, along with other written resources that may assist in communicating your or your child’s diagnosis with schools, employers and family members.

How can I explain mastocytosis to others (family, school, early childhood settings)?
Mastocytosis is a condition where a child’s body makes too many mast cells. These cells release chemicals that can cause symptoms such as itching, rashes, gastrointestinal pain, flushing, tiredness or, in some cases, allergic-type reactions or anaphylaxis.27

Mastocytosis is not contagious, does not cause an immune deficiency, and does not make a child immunocompromised. It also does not cause developmental or cognitive impairment. With support from trusted adults to avoid triggers, manage symptoms and take any required medication, most children can attend school, childcare and extracurricular activities just like their peers.

Learn more about paediatric mastocytosis treatment, supportive care and visit our childcare and schools resources for help communicating your child’s needs .

Procedures, exposures and medical safety

Can I get vaccinated with mastocytosis?
Yes, most patients with mastocytosis can safely receive vaccinations. However, those with a history of severe reactions or anaphylaxis should discuss risks and precautions with their specialist before vaccination. In some cases, additional monitoring or pre-medication may be recommended.23,24,25

Please discuss your individual vaccination needs with your specialist.

Does having dental, surgical or aesthetic implants cause mastocytosis?

Mastocytosis is a haematological neoplasm caused by the abnormal accumulation of mast cells. While a major surgical event, with or without implants, may appear to unveil or worsen symptoms, this reflects mast cell reactivity rather than disease causation.

There is currently no clinical evidence supporting the universal avoidance or removal of materials used in dental procedures or surgical implants, including those used for cosmetic purposes, based solely on a diagnosis of mastocytosis.

If you have concerns about current or proposed implants and how they may relate to your individual health circumstances, including risks for anaphylaxis, please discuss them with your treating specialist.17

Does contrast dye cause mastocytosis?
Mastocytosis is a haematological neoplasm involving the abnormal accumulation of mast cells, usually driven by a somatic mutation which arises in mast cell precursors over time, not from a single external event such as exposure to contrast dye.

Some patients with mastocytosis may be sensitive to contrast dyes, which can temporarily activate mast cells and cause symptoms such as flushing, low blood pressure or, rarely, anaphylaxis. In some cases, a reaction to contrast may be the event that leads to further investigation and diagnosis, but this reflects mast cell reactivity, not disease causation.18,19

If you have mastocytosis, are being assessed for it, or have a history of reactions to contrast dyes, talk to your specialist or radiologist about how to reduce any risks associated with required scans.

I’m having surgery or a dental procedure
Your treating surgeon, dentist, anaesthetist or procedural team will provide the most appropriate guidance for managing your pre- and post-procedural risks. If needed, your mastocytosis specialist, immunologist or haematologist may offer additional advice or coordinate with your other specialists by way of a letter of recommendations.

Most people with mastocytosis tolerate medical, dental and surgical procedures well. However, mastocytosis may increase the risk of mast cell activation or mediator-related reactions during some procedures. Risk varies between individuals and not everyone requires the same precautions or premedication. Planning should be tailored to your mastocytosis variant, known triggers, previous reactions, current treatment, procedure and anaesthetic needs.

When appropriate, your treating team may avoid medications or exposures that have previously caused reactions, continue your usual mast cell-directed treatment and develop an individualised plan for managing peri-procedural reactions. Decisions about premedication or changes to your regular medicines should be made by your treating clinicians according to your individual risks and procedural needs.

The following resources may also assist discussions with your treating team:

Financial support and insurance

Is mastocytosis considered a disability for National Disability Insurance Scheme purposes?

Mastocytosis is not listed as recognised under the National Disability Insurance Scheme (NDIS) and to our knowledge, there is no verified or consistent pathway for accessing NDIS support based solely on a mastocytosis diagnosis.

Generally speaking, NDIS eligibility applies to individuals who have a disability resulting from a permanent impairment affecting intellectual, cognitive, neurological, sensory, physical or psychosocial function. In some cases, individuals living with mastocytosis who also have comorbid conditions that meet these criteria may be eligible for support through those conditions.

Eligibility is assessed on a case-by-case basis with supporting medical documentation. NDIS inquiries should be raised directly with treating specialists, general practitioners or, for general inquiries, the NDIS.

You may also wish to contact a national or local disability advocacy organisation for further guidance or support.

Am I eligible for Centerlink payments due to my mastocytosis?

Eligibility for the Disability Support Pension (DSP) depends on the functional impact of the condition, the level of impairment and whether it affects an individual’s ability to work 15 hours or more per week on an ongoing basis.

Other Centrelink programs, such as JobSeeker payment, have different eligibility requirements and may offer temporary medical exemptions of up to 24 months where an individual is unable to work or meet mutual obligation requirements due to illness or disability.

DSP inquiries should be raised directly with treating specialists, general practitioners or, for general inquiries, Services Australia.

You may also wish to contact a national or local disability advocacy organisation for further guidance or support.

Will mastocytosis impact private health insurance in Australia?
In Australia, private health insurance operates under a community rating system, which the federal government mandates. This system ensures that health insurers cannot charge different premiums based on an individual’s health status, medical history, or the number of claims made. As a result, patients with mastocytosis are entitled to purchase the same insurance products at the same price as any other individual.6,7

More mastocytosis information

Citations
  1. Mastocytosis.org.au. 2024 ECNM patient roundtable discussion. Accessed 1 December 2025.
  2. Kiach K, Niedoszytko M, et al. 21 January 2016. Pregnancy and Delivery in Patients with Mastocytosis Treated at the Polish Center of the European Competence Network on Mastocytosis (ECNM). Accessed on 27 Oct 2025.
  3. Ferrari J, Benvenuti P, Bono E, Fiorelli N. Front Oncol. 2022 Apr 27;12:874178. Mastocytosis: Fertility and Pregnancy Management in a Rare Disease. Accessed 27 Oct 2025.
  4. Chollet MB, Akin C. Hereditary alpha tryptasemia is not associated with specific clinical phenotypes. Journal of Allergy and Clinical Immunology. 2022 Feb;149(2):728–735.e2. Accessed 31 July 2025.
  5. Genome.gov. Autosomal dominant disorder. National Human Genome Research Institute. Accessed 1 December 2025.
  6. Private Healthcare Australia (PHA). Private Health Insurance Community Rating System. Accessed 27 Oct 2025.
  7. Commonwealth Consolidated Acts. Private Health Insurance Act 2007 – Sect 55.5. Accessed 27 Oct 2025.
  8. Leone A, Macagnino S, D’Ambra G, Veltri G, Perla D. Systemic Mastocytosis: Radiological Point of View. Mediterr J Hematol Infect Dis. 2021 Sep 1;13(1):e2021056. Accessed 29 Oct 2025.
  9. Australasian Society of Clinical Immunology and Allergy. ASCIA Action Plans and First Aid Plans for Anaphylaxis. Accessed 9 Dec 2025.
  10. SM Companion. Traveling with systemic mastocytosis: My tried-and-true tricks. Accessed 9 Dec 2025
  11. Australian Government Department of Health, Disability and Ageing – Office of Drug Control. Travelling to or from Australia with medicines and medical devices. Accessed 9 Dec 2025.
  12. New Zealand Customs Service – Te Mana Ārai o Aotearoa. Medicines. Accessed 9 Dec 2025.
  13. Arber DA, Orazi A, Hasserjian R, Thiele J, Borowitz M J, Le Beau M M, Bloomfield C D, Cazzola M, Vardiman J W. The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia. Blood 2016; 127 (20): 2391–2405.
  14. Khoury J D, et al. The 5th edition of the World Health Organization Classification of Haematolymphoid Tumours: Myeloid and Histiocytic/Dendritic Neoplasms. Accessed 29 Oct 2025.
  15. U.S. Food & Drug Administration. FDA approves avapritinib for advanced systemic mastocytosis. Accessed 9 Dec 2025.
  16. Kulinski JM, Metcalfe DD, et al. Elevation in histamine and tryptase following exercise in patients with mastocytosis. J Allergy Clin Immunol Pract. 2019 Apr;7(4):1310-1313.e2. Accessed 29 Nov 2025.
  17. International Mastocytosis & Mast Cell Diseases Awareness Day Committee. Mast cell diseases fact sheet set — English. Mastocytosis-MCAS.org. 2025. Accessed on 30 November 2025.
  18. Schwaab J, Brockow K, Riffel P, et al. Low risk of contrast media-induced hypersensitivity reactions in all subtypes of systemic mastocytosis. Annals of Allergy, Asthma and Immunology. 2022;128(3):314-318. Accessed on 30 November 2025.
  19. The Royal College of Anaesthetists. Mastocytosis and anaesthesia — advice for patients. 2014. Accessed on 30 November 2025.
  20. Mounié M, Burel H D, Molinier L. Lifetime Disability-Adjusted Life-Year Assessment of Indolent Systemic Mastocytosis. The Journal of Allergy and Clinical Immunology: In Practice, Volume 13, Issue 4. Lifetime Disability-Adjusted Life-Year Assessment of Indolent Systemic Mastocytosis. 2025 Apr. Accessed 27 October 2025.
  21. Li J Y, et al. Review and Updates on Systemic Mastocytosis and Related Entities. Cancers (Basel). 2023 Nov. Accessed 30 Nov 2025.
  22. Swarnkar B, Sarkar R. Childhood Cutaneous Mastocytosis: Revisited. Indian J Dermatol. 2023 Jan-Feb;68(1):121. Accessed 1 Dec 2025.
  23. Zanoni G, Zanotti R, Schena D, Sabbadini C, Opri R, Bonadonna P. Vaccination management in children and adults with mastocytosis. Clin Exp Allergy. 2017 Apr;47(4):593-596. Accessed 14 Dec 2025.
  24. Bonadonna P, Akin C, Castells M, Sabato V, Carter M C, Siebenhaar F, Gulen T, Hartmann K, Valent P, et al. COVID-19 Vaccination in Mastocytosis: Recommendations of the European Competence Network on Mastocytosis (ECNM) and American Initiative in Mast Cell Diseases (AIM). The Journal of Allergy and Clinical Immunology: In Practice, Volume 9, Issue 6, 2021, Pages 2139-2144. Accessed 14 Dec 2025.
  25. Abuhay H, Clark A S, Carter M C. Occurrence of Unexpected Adverse Reactions to Vaccines in Children with Mastocytosis. J Pediatr Res. 2020 Apr 9;7(1):81-86. Accessed 14 Dec 2025.
  26. Valent P, Akin C. The Journal of Allergy and Clinical Immunology: In Practice, Volume 7, Issue 4, 1109 – 1114. Doctor, I Think I Am Suffering from MCAS: Differential Diagnosis and Separating Facts from Fiction. Accessed 7 Dec 2025.
  27. Akin C, Gülen T, Castells M C, Elberink H O, Valent P, Diagnosis and management of patients with mast cell activation syndromes: status 2026, The Journal of Allergy and Clinical Immunology: In Practice (2025). Accessed 27 Nov 2025.
  28. Australasian Society of Clinical Immunology and Allergy (ASCIA). Position Paper – Diagnosis and Investigation of Mast Cell Activation Disorders and Syndrome. Accessed 15 December 2024.
  29. Australian Government – Job Access. Guidelines on reasonable adjustments. Accessed 16 Dec 2025.
  30. Ombudsman New Zealand – Kaitiaki Mana Tangata. Reasonable accommodation of persons with disabilities in New Zealand – Full guide. Accessed 16 Dec 2025.

Disclaimer

Last updated: 27 August 2026

Please note that this information is provided for general educational purposes only and does not replace medical advice, nor should it be used in place of consultation with a qualified health professional. While care has been taken to reflect current information based on reputable scientific source material at the time of writing, and TAMS will continue to update information periodically, omissions or inconsistencies may occur as scientific knowledge evolves.