Systemic Mastocytosis Specialists

[MrsT63]

Hi - is anyone aware of any consultants in the UK that specialize in SM and if so how to get a referral?

I was diagnosed over 10 years ago after many years of trying to discover what my illness was and now see a Haematologist once a year. When I have worrying new symptoms my GP will do blood tests and then say they can do no more and usually asks me to contact the Haematologist who invariably tells me it's not SM related and refers me back to GP. As both seem to be not very well informed of Masto it's difficult to know where to go from here. Any advice would be greatly appreciated.

[Jess-UKMasto Partner]

Hi MrsT. We definitely have mastocytosis experts here in the UK. If you send me an email at [e-mail] I can look in our database to see who might be near you and suitable! Definitely best to have someone who can care for all of you and not just your blood counts! I'm sorry you've been having this experience! Very best wishes, Jess