Mast cell activation syndrome (MCAS)

All about caring
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Hi everyone,

Just wanted to ask if anyone has experience with mast cell activation syndrome? My partner has multiple chronic neurological conditions and one of their healthcare providers has suggested they might have MCAS but mildly, not as their main concern.

It does make sense given the symptoms, but my biggest question is whether MCAS is usually progressive or whether people who have a mild case tend to stay that way. At the moment, my partner’s symptoms with that side of things are manageable but it worries me that this could develop into something more serious.

I’ve searched for the info online but it seems like data is limited, so I thought I’d see if anyone had personal experience here. Not knowing anything makes the future seem so much more uncertain. Thank you in advance :slight_smile:

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Hi @Laura3691
This is not something I have heard of. Like you I searched online. I don’t have personal experience of caring for someone with this condition.

I’m sure you found it already, but there is an charitable organisation for this syndrome

https://www.mastcellaction.org/about-mcas

You might be more able to link up with others with personal experience through this organisation. They have a Facebook community which maybe helpful too.

https://www.mastcellaction.org/facebook-communities

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