hi everyone

[SLW84]

hi, I am new to this group, I have only recently been diagnosed with cutaneous mastocytosis, it’s taken nearly 12 years to get that. I’m still learning about it and it would be nice to connect with others that deal with this aswell 😊

[Jess-UKMasto Partner]

Hi there! I'm glad to hear you've been diagnosed after such a long hunt for an explanation. As you may know, it is relatively uncommon for adults to be diagnosed with cutaneous mastocytosis and it is more common for it to be systemic mastocytosis. Sometimes the testing doesn't make it clear yet that it is systemic, but it does over time. If you want to share what symptoms you're managing then perhaps others will join in with ideas for managing those symptoms! I'm hoping you've been given two epipens to carry with you. And that you know that sometimes mastocytosis patients can have reactions to anaesthesia, so if you need it you will want the team treating you to know you have mastocytosis. There is a protocol that can be downloaded from our website at ukmasto.org. There's a red button to click for the protocol. Welcome!

[poshpen]

Hi, gosh what a long time for diagnosis. Have you had any further tests or just a skin biopsy?