AGM, December 2017
Impressions from new trustee, Andrew Dugdale:
It was really good meeting those of you who attended the AGM on Saturday, my first exposure to actually meeting people in the group, rather than just ‘meeting’ via the list serve, and it was an excellent experience. What a great bunch of people we have got in this group!
The AGM was interesting throughout, and thanks to Jess for putting on a really good day.
Dr Theo (sorry can’t get the whole of his name right) presented a really interesting slide show about current Masto research. Although it was delivered at a level that was probably more suited to a group of doctors, there were still quite a number of really interesting points made.
One area that I found particularly interesting related to how mast cells can cross the blood/brain barrier, which, he says, may be the mechanism to explain the dreaded ‘brain fog’ that I know many of us suffer from. Another point that really hit home for me explained why some smells have such a powerful impact on us. This was explained by the fact that the nasal passages pass very close to some key areas in the brain such as the amygdala (I can’t remember the other two parts of the brain affected). Both of these are really interesting areas, as they are two of my big issues.
He also showed how mast cells are ‘stationed’ wherever a vein bifurcates. This gives them a very easy route to ‘dump’ chemicals directly into the blood stream. He also showed images of the mast cells actually degranulating! Wow- science is really catching up with our disease – so let’s hope there could be a cure on the horizon one day soon?
The other element I picked up (from an intensive hour of data dump) was that there are naturally occurring chemicals that damp down mast cell reactions – the research here seems to be early stage, but maybe increasing the levels of these compounds in our bodies could be one way of reducing our often violent reactions to ‘things’.
The down side of the presentation was the fact that so little is still understood about MCAS. He explained that this is because the presentations by the patients are so variable, and hard data from the time of an attack is so hard to come by, that it is hard to find patterns to analyse. He said Masto was easier as it is clear that most people have the KIT mutation – so the problem is generally easy to identify through a bone marrow biopsy. Let’s hope that MCAS research catches up soon!
I look forward to meeting you all at our next event.