Association for Multiple Endocrine Neoplasia Disorders

We are all multi-dimensional people and one of the dimensions of me is that I am a person with Multiple Endocrine Neoplasia Type 2b. Through my contact with the AMEND group, it is only recently that I have become outspoken and accepting of this dimension of me.  Until this year, many people in my life would not have been aware of my medical condition.  I suppose I wanted people to recognise me for my other qualities – my work ethic, my party-side, my ability to do whatever I put my mind to, my sarcasm!  I felt different; and all I wanted to be was to be like everyone else.  I wanted to be normal.  

This year I attended the Information day in Bristol and met others with MENs. There is a lovely sense of ease in meeting others with MENs; for the first time in my 36 years, I feel I have nothing to hide and nothing to prove…I am a successful and happy person who has limitations – just-like-everyone-else.  I am normal.

I live in Northern Ireland and I have been working full-time in the area of theatre and community arts until recently; I have reconsidered my priorities and am now working part-time.  I live independently and love theatre, live music, Coronation Street, poetry, Irish language, a hot curry and a warm brandy before bed! These are very important parts of me too!

And now for the medical bit …

My background is littered with medical appointments; having been diagnosed in Crumlin Hospital Dublin, I have also been a patient in many hospitals in Southern Ireland and in Northern Ireland and in London.  I have had many of the usual symptoms and difficulties associated with MEN2B that are well recorded through the website.  It was perhaps the lethargy, some periods of depression, negative body image and problems with constipation that have affected me most. I have found medical practitioners largely unsympathetic to these ongoing problems – as long as I have been breathing they were unconcerned.   In my thirties I have had psychological support that I felt was difficult to secure and long overdue.  I am eager to point out however that it is the quality of life as well as life itself that is important.

My immediate family is made up of my mum and dad, and my two sisters – and I now am an auntie to four additions.  They too have been impacted upon by my health condition – we have all experienced a disruption to normal life when hospital appointments, operations and periods of recovery all were necessary.  I have a little dog called Frank.   At a particularly low time in my life I opted to adopt Frank from a rescue centre, against much advice.   I forced myself initially to walk him every day – something I now do with pleasure.  My physical and mental health improved amazingly when I adopted him.

I have recently joined the Board of Trustees for AMEND.  I hope that this will enable me to continue to strengthen the support that AMEND provides for patients and their families and to provide more awareness among practitioners about the condition and how they can support people with the condition.