Face It Together (Adult Group)

 

I have a facial Port Wine Stain and following ineffectual radium isotope treatment as a small child have lived quite happily with it for the last half-century or so. I joined the group about five years ago after reading an article on laser treatment for birthmarks in which the BSG was mentioned.

At the time I was headmaster of a large boarding school in Suffolk and thought this a good venue for 'Family Days' and fundraising activities. I also felt that I could perhaps offer an alternative perspective on living with an untreated birthmark.

I am married to Jane and we have a daughter, Emma (born in 1973) and a son, Simon (born in 1976) and two grandchildren. Following my retirement from The Royal Hospital School I was invited to take over the chairmanship of the BSG from Mark Lingfield, which I did in January 2005.

Although the support of families with young children has been the core activity of the group I am very keen that the membership should continue to expand to include more teenagers and adults with birthmarks. I am sure that those of us who live with a birthmark have a role to play in not only offering support to others but also in furthering the aims of the BSG of informing and educating the medical profession and the public generally about birthmarks

I live near Bath with my husband and two sons, Charlie (born in 2005) and George (born in 2006). George was born with a large haemangioma on his forehead and after several conflicting diagnosis from several GP's, I surfed the web and came across the BSG. It was after receiving reassurance and advise from them that I asked for a specialist referral and was eventually sent to Great Ormond Street Hospital, where we are told that George is quite unique and has an unusual type of birthmark that they have never seen before! So he is under review at the moment.

I am studying for the AAT Accounting Diploma at the moment and work part time as an Accounts Administrator, so when I saw that the BSG were looking for a new Treasurer I jumped to it!

I'm Alison Jones the Haemangioma contact for the group but I am ably assisted by Bev and Annette. I live in Bagshot, Surrey with my husband and two beautiful daughters Mia (born in 2001) and Megan (born in 2003). Megan has a large Haemangioma on her left cheek rising to her temple which affects her eye, one on her tummy and another on her finger. We saw a Fun Day advertised at Great Ormond Street Hospital (as this was before we got a computer) and went along. We found it informative, reassuring and a lot of fun too! When the group were asking for volunteers I thought this an ideal opportunity to help others and give something back, so here I am.

 

Hi there, I'm Suzanne, I was born in 1976 and live in Wisbech, Cambridgeshire. About a week after I was born, an outline appeared on my face around my right eye. This developed into a strawberry haemangioma, which grew and became very heavy, sealing my eye shut. As the mark was over my eye and there was a risk of losing my sight, I had an operation to remove some of the birthmark - but unfortunately my sight could not be saved and I cannot see out of my right eye at all.

I then had two further operations to "tidy up" the quarter of my face that was affected by the mark. Like many of us, I suffered times of low self-esteem - during my teens I wore my hair over my face, and even refused to put make-up on my "bad eye", thinking that if I ignore it everyone else would as well! I also have further birthmarks down the right side of my body, from my bottom to my toes, which made P.E. and swimming at school a real misery. I did try camouflage make-up and laser treatment, but soon gave up - it just wasn't for me.

With lots of love and support from my family and friends, and a growing self-belief, over the past few years my confidence has grown and grown. I went to University, and even fulfilled my dream to become a dancer, before following a successful career in fashion. I now run my own fashion label, Fashion Junkie (www.fashionjunkie.net), for women sized 10-32, alongside being mummy to baby Olivia Grace.

I used to be so nervous of being photographed, but have now appeared in various articles in national newspapers and magazines about my birthmarks - talking about it all has been such a liberating experience, and I hope that reading about me has helped others too. I wish that the Birthmark Support Group had been around when I was a child, having people with similar experiences to talk to would really have helped my parents and I in so many ways. I am just so glad that I am part of the Group now, and look forward to meeting you all and sharing stories!

 

Ian Clover

Email and Web Site Administrator and Committee Member

I'm Ian Clover and I manage the web site and email administration for the group. I live in Brighton with my wife Rachel and children Rory (born in 1994) and Hannah (born in 1996). Rory has a port wine stain on his left shoulder, arm and hand.

My wife read about the Naevus Support Group (no longer active) in the Bounty booklet. The group referred us to Great Ormond Street Hospital who explained in detail the steps required to obtain treatment for Rory. They were fantastic. After a few consultations it became apparent that many parents were in the same situation as us where it had either been hard to get information or the information provided was incorrect.

We felt strongly that we didn't want other parents to experience the issues we'd had in trying to obtain treatment for Rory so when GOSH asked if we'd like to help in the set up of a national support organisation we quickly got involved.

I was born in 1975 and have a facial Port Wine Stain. I am currently undergoing treatment, using pulse dye laser, at St Thomas's Hospital in London. As you can see I always wear make-up but to give you an idea of the size of my mark I have 1,200 zaps each time.

The main reason I joined is because of my Mam & Dad, they have always said that they wished that they had people to talk to about birthmarks when I was born. All the time I was growing up they worried that they had made the wrong decision about make-up. I think they made the right decision for me.

I want to have enough people with different sides of the same story to help all the other "Mammys and Daddys" to make the best decision for their child and their family in the early years when the most affected, the child, can't make the decision for themselves.

I discovered the BSG back in 2002. It is wonderful to see how it has developed since then and the specialised groups that have formed.

As you can see, I was born with a portwine birthmark on my face. I have been through many experiences, as we all have, of living with a birthmark, and I understand how comforting it can be to have a chat with someone who really knows where you are coming from. I have also experienced various treatment options both here in the U.K. and overseas.

Sharing our experiences and our coping stategies will, I am sure, be extremely beneficial to all. I am really looking forward to hearing from everyone about anything they wish to talk about.

Hi my name is Julia. I am well over 21 (born in 1956) and I work part time as a nurse in my local day surgery unit. I have recently become a Christian. I have been married to Brian for nearly thirty years and we have three daughters. I have a portwine stain covering my left leg, and have needed surgery during my teenage years. This was due to an increase in growth of my leg, directly caused by my birthmark. I only heard of the BSG after searching the internet and contacted the BSG, I think in 2002 to ask for one to one support via e-mail. Nick and I were put in touch and we e-mailed for a while. I went to the first adult meeting in Winchester and met some lovely people. It was the first time I had really talked about my birthmark and met other people with birthmarks. It was a special day and a few tears were shed. I was then contacted by Nick and asked if I wanted to become a committee member. I am so pleased to have the opportunity to assist and support the work of the BSG. I hope to meet members at events in the future.