When will those who are shielding be offered the COVID vaccine?

[Jess-UKMasto]

Rare Diseases UK has shared this information that will be relevant to those of you who have been determined to be "Clinically Extremely Vulnerable" and received letters asking you to shield. covid-19.geneticalliance.or...

We know that people have questions about vaccination and how it might relate to their mast cell diseases. We are working with our medical advisors to come up with a summary of what is known so far, and I expect we will have some questions to discuss with your own doctors. We know there is a great diversity within our patient population, so there will not be one answer for our members about which vaccine might suit etc. We do know already that many of our members tolerate vaccination and are fully vaccinated including getting annual flu vaccines. We also know there are a small number of patients who have previously had reactions to vaccines whose doctors have suggested that in some cases they not get a particular vaccines. This is a diverse group!

We also hope to set up a mechanism so you can let us know how your vaccine experience went, so that we can feed that info back to clinicians to help them help you! Stay tuned.

[Kay-UKMasto Ambassador]

Many thanks Jess - I knew you'd be on the case! Incidentally when I clicked on the link in your post I got a 403 error "Forbidden", so I guess it may not be accessible to everyone.

[Jess-UKMasto Partner in reply to Kay-UKMasto]

Thanks, as always, for your discerning eye. I've edited it. Could you check it when you have a moment to see if it works now?

[Kay-UKMasto Ambassador in reply to Jess-UKMasto]

Thanks Jess - it works fine now - and I'll be in category 4 from the look of it (having been put on what my husband calls the "endangered species list" aka "clinically extremely vulnerable" - though I don't know why, though I'm not (quite) yet 70.

[Jess-UKMasto Partner in reply to Kay-UKMasto]

LOL at what your husband is calling you. Love it. I think probably the combo of your SM and other medical history tipped you over into the Endangered Species. My observation is also that patients who appear to be equivalent in terms of mastocytosis will be on the list if at a haematologist for their care vs not on the list if a dermatologist leads there care-- but that's just a casual observation, not based on data.