Rare Disease Day - 28th February 2015

David’s Story

My name is David and I am 41 years of age. Until recently I thought I was the only person to have a CMN and I probably would of until now if it wasn’t for my mum phoning me and telling me she had just watched This Morning and seen a young girl on the programme with what I had. At first I found it hard to believe that there was someone the same as me so that evening I looked up the ‘This Morning’ website and saw Jodi. I then went on to the Caring Matters Now website and I was in total shock that there was even a name for my condition let alone there where other people who had the condition. I decided to email Jodi, not really knowing what to say and to be honest, I was feeling scared because I have kept my CMN to myself and I never discuss it. However, here I was e-mailing a total stranger. Anyway, Jodi emailed me back and I felt able to tell her some of the things that happened to me so far in my life… good and bad happy and sad. We both felt that it would be a good idea to share some of my experiences with family and friends and people that have the same condition.

I can’t really recall the first time I noticed that I was different to everyone else. We used to have family holidays when I was younger and my brother and I, who is two years older than me, would splash around in the sea without a care. I would have my swimming trunks on even though it didn’t cover my right leg and my back where my CMN is. I think it was about 9 years old when things started with my friends calling me names and when I played for the school football teams and the other team would stand and stare at my leg. That’s when I started to get conscious of my CMN.

The day I remember the most was when I went to the local swimming pool. I was the first to arrive and it was a hot day so I thought I would get into the pool and wait for my friends. The pool was really busy because it was such a hot day. After ten minutes the lifeguard came over and asked me to leave the pool.

He told me I was frightening the other people in the pool and he didn’t want what I had spreading in the water. I went home upset and to this day I don’t think I’ve told my mum about that day.

Bless my mum… I am sure she blames herself for my CMN but it’s not her fault its just one of those things. My mum tried everything for me when I was younger, including countless trips to Oxford hospital, but I used to get fed up with being referred to as the boy with the moles. At times I used to feel like a freak show, as all these doctors stood around poking and prodding me and nothing ever seemed to work.

I still got on with my life and had loads of friends and I used to always be out and about. My late teens were a bit of a blur, as I discovered the pub and I had money to go and watch Chelsea. At the age of 22 I meet a lady that would later become my wife. I remember the day in my flat when I told her about my CMN. It was a very hard day and I thought when she knew she would dump me but here I am 20 years later married with two daughters aged 18 and 13. I did worry before both my daughters were born that they would have a CMN but they didn’t and neither of them have ever questioned my CMN. I feel so proud of them both, as they are so caring and so excepting of other people and that we are all different. In summary I’ve had a great life so far and my CMN hasn’t stopped me from doing anything that I’ve wanted to do.

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