My Story by Jodi Unsworth
My name is Jodi Unsworth (27) and I have a large Congenital Melanocytic Naevus (CMN), which covers 80% of my body. CMN is a large, dark brown/black, hairy birthmark which covers areas of the body.
For the first 15 years of my life I was lead to believe that I was the only person to suffer with CMN and my parents and I were not even told what the condition was called! During the first 15 years of my life I underwent 30 plus operations, resulting in missing 3 years of school. The medical staff believed that the operations were necessary, as they did not know if the condition could be life threatening. I therefore undertook many types of surgery to remove the CMN including, excisions, dermabrasion and skin grafts. I guess you could say that I was treated like a guinea pig, as the doctors didn’t really know what kind of treatment would remove the CMN.
During my school days I experienced bullying and feeling isolated from all my peers. I had good friends throughout school, but there was always a group of children, young people and even adults who would react to the skin condition in an unkind manner. I remember on one occasion, when I was 10 years old, wearing a child-like bikini on a Cornish beach and being starred at by not only children but adults too. I guess that was the first time I decided that I would try not to be effected or ruled by the thoughts of others, but instead I would rule my life and not other people or my condition.
On another occasion a bus driver wouldn’t let me on the bus in case my skin condition was contagious. However, the story ended positively as all my friends and other young people from my school got back off the bus and told the driver that he was very unpleasant!
Throughout my teenage years I had good times and difficult times. The difficult times were due to peer pressure and the constant battle in wanting to look like my friends. Like most teenage girls, I bought magazines and watched teen programmes and this upset me, as I would want to look like the other girls in the magazines and on television. I always remember thinking that I would never be successful in life because I didn’t have stereotypical looks.
However… I can now look back at those difficult times and realise that my life has been blessed due to having CMN.
In 1996, when I was sixteen years old, I came into contact with Dr Atherton, the leading CMN skin specialist. The way in which I came into contact with DR Atherton, was a miracle itself. A Scottish newspaper was posted through a friend’s door in Liverpool and in the newspaper was an article about a new-born baby with the same condition as me and details of a CMN skin specialist based at Great Ormond Street Hospital. Who knows how that Scottish newspaper got to Liverpool?!?!
On meeting Dr Atherton, he was able to give me a name for my condition and tell me that there were actually other children, young people and adults with CMN. I and my parents couldn’t believe our ears, as I had come to terms with the fact that I was more than likely the only one with this particular skin problem. Dr Atherton asked if I would help support other sufferers of CMN and I agreed straight away, as I didn’t want others to go through the same difficult and isolating times as I did.
Since agreeing to help support others with CMN I have been in contact with over 160 sufferers and their families. I established a nationwide support group for CMN sufferers and their families called Caring Matters Now (CMN) in 2000. The support group holds family days throughout the year in different parts of the country. I and my newly formed CMN support team have also established 10 regional support groups dotted around the UK, which enables CMN sufferers and their families to develop friendships within their home areas. The CMN support group also raises £25,000 each year to fund the CMN medical research at Great Ormond Street Hospital. The funds pay for a part-time doctor, Veronica Kinsler, to research into CMN. Dr Kinsler has already discovered many medical facts about CMN.
Twelve years on…I have won Young Person of the Year Award 1999, have completed a BTEC in Childhood Studies and a BA HONS in Educational Studies, worked at Liverpool FC as the Disability Liaison Officer for five years, establishing six disabled football teams and the Liverpool Disabled Supporters Association (yes, I did get to meet all the good looking footballers!), won Merseyside Women of the Year Award 2006 and I am now coordinating a new aid relief project called ‘Buckets of Love’ for a Christian aid-relief charity called Blythswood Care
‘Buckets of Love’ involves filling buckets, provided by Blythswood Care, with 25 aid-relief items for families living in Poverty. I am establishing this project throughout the UK, aiming to fill at least 20,000 buckets! I held the ‘Buckets of Love’ Launch in February 2008 and many stars attended, including Hollyoaks actors and actresses, x-factor band Eton Road and the chief executive of Liverpool Football Club, Rick Parry.
Aid-relief work has always been a big part of my life as I have worked in many poverty-stricken countries, including Romania in 1997 working in an AIDS orphanage, Armenia delivering Christmas shoeboxes in 1998, Macedonia delivering Christmas shoeboxes in 1999, Russia in 2001, 2002 and 2003 helping to run soccer camps for children living in poverty and affected by recent terrorist attacks, Liberia, Africa 2006 and 2007 running summer Bible schools in the heart of the Liberian jungle.
I do believe wholeheartedly that due to my CMN skin condition I have been able to achieve more things in life than the majority of my friends. It has given me confidence and a personality to live my life to the full and not let anyone undermine who I am and what I can achieve. I had to make a decision during my teenage years not to let my condition make me a bitter person but instead a better person…I feel blessed to have this condition and I hope I am able to support many other CMN sufferers and their families.
To read more about Jodi’s work with the ‘Buckets of Love’ appeal please visit www.blythswood.org
