Rare Disease Day - 28th February 2015

Nathan’s Story

Nathan

I found out about Caring Matters Now after a friend got in touch having seen another person with birthmarks as noticeable as my own on a TV clip on the internet.

I looked on the net and to my surprise there it was. I had only ever seen a newspaper cutting back when I was 16 years old of someone just like me, other than that I had never heard of, or met anyone like myself before.

At 35 years old I just assumed that my birthmark was so rare that I’d never meet another person like me. It was then that I looked up Caring Matters Now. It was such a shock to realise how many others there were; just as special as me, who all spoke openly about something that they were so proud of. I felt assured that I wasn’t mad and it was possible to love myself as much as I did; despite being so obviously different.

The difference between my skin and others was quite noticeable like I say…

I was born in Cambridge, in 1978 with CMN Syndrome. Back in those days there wasn’t much information available about CMN. Removal was thought to be the best option, so the consultants at Addenbrookes tried to remove the areas that they thought would be exposed to the sun in later years.

My back is the main area covered by my CMN as well as my right arm down to the hand, my neck, the back of my head, the right side of my chest and the rest of my body and face had some smaller areas (but still of considerable size) and also other small spots all over.

By the age of 8 years old I had numerous operations to replace the skin on my right arm with skin from my stomach.

At 3 years old a tumour the size of a golf ball was taken from my back just below my right shoulder blade.  Since then, I have undergone more surgery to remove further growths, fatty lumps or strange spots. The surgeons have got most of the tumour, but I don’t think that it’s ever really gone.

I’ve been lucky to be seen at least every year of my life by my consultants.

I’ve had times in life, as a child mainly, when others have not been so kind because of my spots, but, strangely I found those types of people always ended up wanting to be a friend of mine! Strange really!

As I’ve grown into my skin most think it really suits me, it’s faded a lot but still has all it’s colour to me. Some say they don’t notice it but I prefer it when people do to be honest. It reminds me of the fight that I shall never forget.

But, unfortunately at the age of 35 my fight stepped up a gear.

For a month or so I was suffering visual problems, with what I, and the GP thought were just migraines. In mid 2013, I suffered a seizure after biking home from work. I was found to have two stage IV melanoma mets in the optical area of my brain. These brain tumours grow quick. The brilliant neurosurgeon whipped them out and I was on my way to recovery in no time at all. There was no primary cancer found so we had no idea if it was going to come back or not. Loved ones and friends made a fuss but it was like I had been prepared for this moment. I smiled the whole way through.

Don’t get me wrong, it wasn’t easy, the rest of this world isn’t aware of how tough CMN can make a person. After this came a lot of changes.

I had to change my job, although I had been well and able throughout it all, and to prove this I had to see counsellors for the first time in my life. They were all very shocked with my positive mental attitude! I also saw some doctors who pretty much told me my days were numbered???

This was the risk of being so different yet it was being so different that would give me the strength to know it’s just a part of my life and not the end. But it does make me wonder how things would be without all of the removals I’ve had over the years.

I have continued to work whilst going through 3 monthly check ups, which include MRI scans, CT scans, dermatology and oncology check-ups.

After such a shock diagnosis and hearing about another person out there, I felt it was time to seek others like myself.

In March 2015 my partner Julie and I went along to the London CMN Support Day before attending the CMN adults gathering.

We were able to talk to a few parents and giggle with the young ones affected by CMN. It took my breath away to know that feeling in me is out there, I could feel it in the air and see it in the smiles……confidence!

We then made our way to the adults gathering. I had never been so nervous in my life!  I was worried that I was going to have more in common with the children than the adults!  I wasn’t sure if my feelings and emotions would be the same as the other adults I would soon be meeting.  Julie and I sat down and had a drink before we ventured on…….

Admittedly I had two drinks to Julie’s one. I was so overwhelmed with the anticipation that I was shaking!!!

Then we met the group of adults with CMN, and not to my surprise we all looked very normal, well, as normal as we could look until I got my top off!

I found the beer to taste like water and I had to wet my whistle far too often to keep on top of all things that I’d been needing to say for over 3 decades.  My mouth couldn’t keep up, my ears were trying their hardest to help my brain take in and process all the information coming from people just like myself.  The information and personal experiences shared within the group were so helpful to hear and it was strange to be hearing stories which I could so easily relate to. To say the time we spent together was overwhelming is an understatement!

What lovely people I met on that day! I can’t wait to do it all again, and I advise anyone seeking comfort to do all you can to come along to the next support event arranged for 2016.

It’s strange really because I always thought that if I had met someone with the same condition as me, I’d never leave them alone!  However, I now feel after finding Caring Matters Now, and meeting people like me who are confident and full of life, I wouldn’t want to take any of the valuable time away that we spend teaching the rest of the world how to be happy within their own skin!

Please show Nathan your support in his challenge by donating to his Just Giving page.

One Response to "Nathan’s Story"

  • Cassandra Bird says:

    You are and always have been a beautiful man nayf, what an experience, reading your story of meeting the others, I feel your excitement and totally get it. For me, meeting you was a very similar feeling for me, it was amazing to finally know someone who knew what it’s like to be different from EVERY other person. Always have had a lot of love and respect for you, and Julie too! Children with cmn….be strong be proud, you are beautiful – never doubt it xx

Leave a Reply

Your email address will not be published. Required fields are marked *