Rare Disease Day - 28th February 2015

Amanda’s Story

AmandaHi, I’m Amanda and I was born on October 12th 1967 and one of identical twins. A few hours after my birth my parents were told that I had been born with what they called a ‘Swimsuit Naevi’. It covered my back, round my tummy, buttocks and half the tops of both legs. Also, large satellite naevi on my lower legs and 70-80 smaller satellite naevi from head to toe. The doctors were baffled, as back then a CMN like mine was so rare.

My parents couldn’t understand why I had been born with this, let alone my identical twin born clear. My parents were given a referral for me to a plastic surgeon, who advised them to keep an eye out for any changes or lumps.

Even though it was so shocking for them to try and get over all the questions of ‘why’ and ‘how’ it happened, they raised me and my identical twin as normal as possible.

People would stop my mother in our pram and coo, but in the summer months, people would comment on the marks, but she would just ignore anything nasty said.

When I was about 18months old they noticed a large lump on my right buttock, which kept bleeding and became sore. So at 18 months old I had my first operation. As the lump was big I ended up with half a buttock, but at least the lump was benign to my parents’ relief.

As the years went by I had operations to remove naevi from different parts of my body and replace with skin grafts.

Unfortunately, when I had the large naevi on my back removed aged about 8 years old, I developed impetigo (an infection of the skin) and due to all the itching the skin graft that was used was destroyed and I was left badly scarred. Of course I still continued to have further surgery to help my condition, but on my legs the naevi grew back. My last operation as a child was to have some large naevi removed from my face.

I was always envious of my sister for being born clear and even though we sometimes wore identical outfits, I always felt she looked better than me, but she would comfort me as she knew how upset I got. She would do her best to make me feel better and also tried to protect me from the bullies, sometimes nearly getting into trouble herself. Teachers were understanding and my parents knew how difficult it was for both of us.

AmandaI recall my school days, which were difficult due to name calling, such as ‘spotty dick’, ‘scar face’ and ‘scabby’. So while at senior school, I joined the Gymnastics club during lunchtime with my twin. I thoroughly enjoyed it and even though I wore a leotard which showed my CMN, I didn’t need to listen to the bullies outside, I couldn’t hear them as they peered through the gym window at school! Don’t get me wrong it was upsetting but I chose to ignore the points and stares and enjoy myself.

I was asked by our coach to represent the school at a local gym competition. I agreed even though I was concerned about showing my lower legs. My Nan made me some blue leggings to match my leotard and nobody even noticed. I was presented with a medal which was truly a special moment for me and my family. That medal will always be a reminder of how I overcame the bullies and pursued something positive for me!

There was still always one thing that played on my mind as I grew up and that was the future and what it held for me…

All I ever wanted when I was a child was a lovely wedding and children. I accepted as I got older that this would never happen for me…….. but it did!

When I was 15 years old I developed a crush on Paul, the son of my Dad’s friend who used to babysit me, my sister and brother. He was ten years older than me, so I never thought he would be interested in me. My family moved away up North when I was 17 years old and it was then that I realised just how much I missed him. I wrote to him asking if he had any feelings for me, even with my birthmark, to which he replied expressing his feelings.

I moved back down to my Nan’s who was local to Paul and we started to date. We dated for four months and then got engaged. We got married four months later and had the wedding I had dreamed of. I had found a man, a wonderful caring man who loved me for me.

We have two children, a daughter Natalie and son Paul and two beautiful grandchildren, 4 year old Molly and 4 month old Oliver.

When I was carrying both Natalie and Paul we were worried about whether they would be born with CMN, but they were both born healthy and Paul with just a couple of birthmarks on his head. Nothing to be concerned about.

After everything I have been through and my worries about the future, I am delightfully happy with Paul, my husband, who sees me for me and not ‘the mark’. He is devoted to me and cares for me since developing medical complications associated with my CMN.

I want to tell all the parents of young children to teens and beyond, that there is someone special out there for everyone and that you can lead a normal, happy life even with CMN. Paul and I recently celebrated our Silver Wedding Anniversary and look forward to many more happy years together.

I am so glad that children and parents affected by CMN have the support of Caring Matters Now, as do my family and I. I hope my story will help and inspire others.

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