Mastocytosis Specialist UK

[yivcthk]

Hi, very new to forum posting but having read through a few threads it seems like a friendly community! Really hoping someone might be able to help

I'm looking for any Mastocytosis specialist recommendations in the UK please?

Diagnosed in Nov 2019 with cutaneous mastocytosis, dermatologist said it's unlikely to progress, but over the past few month have had increasing reactions and now I'm reacting to all foods and any strong smells and am unable to work.

Any help or advice would be much appreciated

[Hidden]

Hello. Dr Adam Mead at OUHT in Oxford is very good.

[yivcthk in reply to Hidden]

Thank you! Have you had direct experience with him?

[Hidden in reply to yivcthk]

I am about to. He was recommended by my Haematologist - it took a while for my GP to work around the new referral system in Northants/Oxfordshire (may be everywhere?). I ended up giving the name and drafting my own letter for the GP to send. I kept being referred to an allergist with a consulting date in January 2022! My appointment is in July, and you can look him up online.

[dobbo2021]

Hello. So sorry to hear this, where do you live?

[yivcthk in reply to dobbo2021]

I'm based in Gloucestershire

[Jess-UKMasto Partner]

Hi there, Yivcthk!

I'm glad you've found us. This is indeed a very friendly group. Please feel free to drop me an email at [e-mail] for ideas about doctors in your area.

I will say here, as it maybe helpful to others with a new diagnosis, the vast majority of adults with mastocytosis have systemic mastocytosis (meaning it is not limited to the skin). It would be great to find you an experienced doctor who can assess the full picture with an good understanding of systemic mastocytosis (which can have few symptoms or a number of them-- so the diagnosis doesn't tell us how a person feels from day to day).

Very best,

Jess

[yivcthk in reply to Jess-UKMasto]

Thank you Jess, I will drop you an email. It's really useful to have this online community resource & I feel much less alone I'd had the rash since being a teenager (now 30) , when I asked after the diagnosis if my fatigue, headaches etc. could be related was told a definitive no... hindsight is a wonderful thing!

[Jess-UKMasto Partner in reply to yivcthk]

I'm sorry you didn't get the right information from the start! Let's hope going forward that symptoms can be managed without a long wait!