We’re very sorry not to be there to speak with you at the BAD 2024, due to unforeseen circumstances.   Thank you for coming here to learn more.

We would want to talk with you about the important of thinking about the whole patient, not just their skin.  Even people with cutaneous-only mastocytosis (as in some children and a small percentage of adults) can have a wide range of symptoms because mast cell mediators released in the skin can travel and cause GI symptoms (cramping, diarrhoea, hyperacidity, nausea), bone pain, fatigue and neurocognitive symptoms (issues with cognition and concentration, headaches, low mood).  This is all the more so in those with systemic mastocytosis– the type most adults have.

With a grant from the BAD we are working on new materials for people with mastocytosis and their families this year.  Please email us if you’d like to be involved in that project.  We’d love to hear what your patients need!  info@ukmasto.org

We also want to let you know about a new trial of a targeted tyrosine kinase inhibitor, bezuclastinib, that has opened in London for adults with moderate to severe symptoms of indolent or smouldering systemic mastocytosis.  There are also trials for those with the advanced forms of systemic mastocytosis.  Here’s how to learn about these trials: Bezuclastinib UK Trials  We are also expecting additional trials to open within the year at several sites across the UK for another TKI targeting indolent and smouldering SM.

If you’d like to learn more about managing the whole patient, we recommend this article about systemic mastocytosis (whether your patient has systemic disease or not) as Table 6 has a great list of symptoms and ways to address them.  Pardanani Systemic mastocytosis in adults: 2023 update on diagnosis, risk stratification and management. Am J Hematol. 2023 Jul;98(7):1097-1116.

Our own document with tips and tricks for managing mast cell diseases can be a help to patients and is here: Self-Care in Mast Cell Diseases

It can be helpful to recognise what can trigger mast cells, and this document can help patients minimise exposure. Triggers

And the anaesthetic protocols from the RCOA and from a GOSH anaesthetist are essential to keep patients safe.

Please don’t hesitate to reach out with any questions!


Here are some photos of cutaneous mastocytosis.  Would you spot it?


child mastocytoma

Child Mastocytoma

child mpcm back

Child MPCM Back

child dcm torso

Child DCM Torso

child dcm leg

Child DCM Leg

child dcm head

Child DCM Head

child blister head

Child Blister Head