Hello :-)

[Randy-UKMasto]

Hi All,

I am one of the forum administrators, here to help where I can. I have Systemic Mastocytosis so understand some of the challenges living with it.

Reach out through the forum and a member or one of the other administrators will try and help.

Randy 😊

[Jess-UKMasto Partner]

I'm also a forum moderator (and Randy and I are the co-Chairs of The UK Mastocytosis Support Group). I was diagnosed with indolent systemic mastocytosis nearly 30 years ago. Looking forward to chatting with people here and providing support in this new setting!

[Topnumpty in reply to Jess-UKMasto]

Just a lowly and lonely, member. Popping in to say “hello”.

Glad I found someone here.😃

I have UP or (CM, as it is now known) and ISM..

[Jess-UKMasto Partner in reply to Topnumpty]

Hello, Topnumpty! Glad you're here! I find the anonymity both reassuring for patient privacy and a bit weird : ). But glad you've introduced yourself and said hello to everyone! Any top tips for what strategies have been helpful to you?

[Topnumpty in reply to Jess-UKMasto]

Hello, and thank you.

Only thing I can think of at the moment is that one needs to be one’s own expert. After all, we live with this all the time. Be prepared for medical professionals not knowing a thing about mast cell disorders, and some even resenting the fact that you have that knowledge when they don’t.

Oh, just thought of another thing. Don’t let your health condition take over your life, and prevent you from doing things, but be prepared. Often it is a case of ‘pacing yourself’, and accepting that you could have to spend time resting and recuperating if you move out of your comfort zone.

[Jess-UKMasto Partner in reply to Topnumpty]

Both pieces really resonate with me! We have to be able to advocate for ourselves, because this is a rare disease and few doctors will have experience with it-- but also because we are the ones living in our bodies and getting to know them, and the doctors only get a snapshot. And as to the second, I agree, too! I am able to enjoy things that might be pushing the envelope a bit, as long as I have a plan and an exit strategy if my body starts to object. Less of that happening these days while I'm home-- but have been exploring to see if I can increase my exercise without setting off my mast cells!