"For those that have seen it as a weakness, well I guess that says more about them than it does about me!"

“I have a rare, long term condition called Systemic Mastocytosis, also known as Mast Cell Disease.  For me it’s adult onset but it’s difficult to pin down when the switch went on as after presenting to my GP for several years with myriad weird and not so wonderful symptoms. Doctors couldn’t pin down a firm diagnosis. It was not until a locum asked me what ‘those strange lesions on my skin were’ and he sent me for a biopsy did I get diagnosed.  That was almost 20 years ago and at that time the condition was even less well known than it is now.

Systemic Mastocytosis is one of those zebra conditions – no two of us are alike.  What we do have in common though are triggers. The problem with these are that it’s an ever growing list – what the mast cells like one day, they might not like the next.  This makes eating out difficult. There is always that fear that the mast cells will swiftly ‘eject’ something that they were quite happy with the day before.

For me, Systemic Mastocytosis means I have too many mast cells. They have mutated and they don’t die off and so the older I get the greater the burden.  The mutation means my ‘fight or flight’ switch is permanently on and when the cells can’t find a real invader, they head on over to an organ of their choice to have a fight with.  Stress is a major trigger for me and sends the mast cells into overdrive and generally leads to more organ damage.

The majority of people I have worked with in the past and work with now have seen my condition as a  positive and have been willing to make allowances for the fact that sometimes I have to work strange hours due to the condition as it can mean no sleep or sleeping for days. This is often reflected in emails or work being sent in the middle of the night or at weekends.  For those that have seen it as a weakness, well I guess that says more about them than it does about me!

It does have its plus side though – I’ve never missed a deadline, am always early for meetings and due to my heightened senses, I can spot a change in a person’s mood or attitude – probably before they do.  So, if I really do have to make a quick exit I’ll be way ahead of the ‘enemy’!”

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