Katy - Aug 97
Katy - Aug 97
A couple of days before the operation! - Sept 98
A couple of days before the operation! - Sept 98

When I was born in April 1997, the doctors and nurses had no idea what the strange black mark on my leg was. My parents were referred to a plastic surgeon at East Grinstead Hospital, who also didn’t know what it was. He very abruptly said “that’s cancerous, her leg needs to come off”. I can’t imagine how scary this must have been for my Mum and Dad.

At the time, new parents were given what was called a ‘bounty box’, which contained things like nappies and rusks, and also a book about looking after babies. The book contained contact information of all the organisations you could ever need for a child, and one of them was for the very newly formed Caring Matters Now.

Mum wrote to Caring Matters Now, who passed her letter on to Dr Atherton, and he invited us to visit him at his clinic. He reassured my parents that there was no medical need for my CMN to be removed, but that if my parents wanted to treat the cosmetic appearance of my CMN then his recommendation was that I have CO2 and ruby laser treatment. Because of the location of my CMN, it wouldn’t have been possible to cut my CMN out and skin graft normal skin on top without severely hampering my ability to walk. Seeing as he was the expert, my parents said yes to the laser treatment.

By the time the operation organised, I was 18 months old. Even in that time, my CMN had lightened considerably – this second picture was taken a couple of days before the operation! (September 1998) My parents were told that when I came out, I would just have a light bandage. But after the operation, my leg was covered in thick bandages from hip to ankle. I had to stay in hospital overnight and my Mum stayed with me.

Katy after surgery - Oct 98
After surgery - Oct 98
Bandages removed and everything healed - Mar 99
Bandages removed and everything healed - Mar 99

When I was sent home the next day, the doctors told my parents to just keep wrapping the bandages over the top, rather than changing them. The wound was treated like a burn, and I ended up with really thick bandages around one leg. I looked so cool. (October 98)

When the bandages were fully removed and everything was healed 6 months later, the overall effect appeared to be nothing more than a little bit of lightening and some red scaring around the edge of my CMN. (March 99 – lying down) Obviously, I remember none of this. During the next couple of years, the scarring around the edge changed from red to white, but the brown pigment of the CMN returned completely. (April 2000 – standing up)

Standing up - Apr 2000
Standing up - Apr 2000
Jul 2008
Jul 2008

As I grew up, I learnt to live with my CMN. Already being aware of Caring Matters Now meant that my parents and I had access to support if and when we needed it. At the time, I don’t think I realised how much of a blessing this was. Looking back on it now, knowing that there was someone there I could talk to if I wanted to, actually took a huge weight off my shoulders.

The photo above was taken in July 2008, when I finished primary school. Apart from the white bit right in the crease of my knee, and around the edge, my CMN was the same colour as everybody else’s I knew. Over this length of time, it appeared the surgery hadn’t done anything drastic to the cosmetic appearance.

However, a side effect of the surgery was that the laser had damaged the hair follicles on my CMN. Rather than growing straight up and out like normal hair, the hairs on my CMN often grew sideways or diagonally. This meant that I frequently got infected spots on my CMN, where the hairs became ingrown. They weren’t pleasant at all, and I remember them being really painful when they popped. In more recent years, I haven’t had as many infected spots on my CMN. I don’t know why, but I’m not complaining!

Throughout my teenage years, I never thought about having any more surgery on my CMN. The main challenge that I faced was the itchiness of my CMN, which we were told couldn’t be fixed with any surgery. I was competing in regional dance competitions and dancing with the English Youth Ballet, so taking time out for what would have been completely cosmetic surgery just didn’t seem worth it to me.

In July 2019, Caring Matters Now held its first ever Residential Support Conference at PGL. I attended, dragging my boyfriend along with me. It was fantastic to attend and see all the younger children getting to meet and make friends with other children who had CMN. It was also incredible for me to meet other adults that were attending their first support event, after discovering the charity through the amazing exhibition, ‘How Do You C Me Now?’.

One of the many presentations that happened during that weekend was a research presentation by Professor Kinsler and her team. The main breakthrough that was presented at the conference was that they had discovered that ‘superficial removal techniques do not alter the final colour of CMN’. This meant that there had been no point treating my CMN with the laser treatment, and that whilst it might have lightened my CMN in the short term, over the long term it will have made no difference to the colour that my CMN will end up.

There’s a tiny part of me that wishes my parents had decided not to have the laser surgery, but I completely understand why they did. The expert medical advice at the time was that the laser surgery was a small operation, and that it would considerably lighten the CMN. If I’d been in their position, I would have followed that advice and decided on having the operation too. Because I had that surgery, my CMN also has a slightly different appearance to CMN that haven’t had any surgery.

Before surgery to remove nodules
Before surgery to remove nodules
After surgery to remove nodules
After surgery to remove nodules

Some CMN’s have what are called ‘nodules’ on them. Another development that was announced at the conference was that in most cases, these nodules were just lumps of excess fat and could easily be removed. My CMN is covered in these nodules, and they were the main cause of the itchiness. The possibility of having them removed was really exciting for me, because I was willing to give anything a go that gave me some relief from the constant itching.

Because I was over 18, I could no longer be treated by Dr Kinsler at Great Ormond Street. I found a dermatologist in London that knew what CMN was and was happy to see me. At the initial consultation appointment, he went straight in and cut off two nodules that were at the edge of my CMN, on their own. This was a trial, to see how my CMN healed from the surgery.

It seemed to go well – when the anaesthetic wore off it was quite painful, but the skin itself healed okay. I therefore decided to have the nodules removed on a larger section of my CMN. The surgery itself was absolutely fine, it only took about 45 minutes in total, under local anaesthetic. I hobbled onto the train home (with help, I couldn’t feel my leg!) and settled myself on the sofa. As soon as the anaesthetic wore off, I have honestly never been in more pain. I didn’t sleep properly for two nights, and I only made it from the bed to the sofa each day and back again!

After those first couple of days, the healing seemed to happen quite quickly. I had the operation on 24th September, and my CMN was healed enough for me to walk around Disneyland Paris for five days on 12th October! In the short term, the surgery appeared to have done exactly what I wanted it to. The itchiness on that section of my CMN wasn’t as bad and the nodules were gone.

Now, 3 years and a pandemic later, I don’t think that having the nodules removed has made any difference at all to how my CMN affects me or my life. Sure, there’s a section of my CMN that doesn’t have small lumps on it, but the rest of it still does. The area of my CMN that was operated on is still fatty – it’s just all in one big lump underneath the skin rather than individual lumps. That section is slightly lighter than the rest of my CMN now, but I have no way of knowing if that’s because of the operation or because it has just lightened naturally. I have decided that I’m not going to have any more surgery to remove any of the other nodules on my CMN.

In some ways, I’m glad that that first laser surgery didn’t remove my CMN completely. There are so many things that I’ve done because of having a CMN and being a part of Caring Matters Now which I would never have had the opportunity to do. I’ve done a skydive, trekked along Hadrian’s Wall and cycled 70km through London at night (I was only supposed to do 60km, but I got lost), all to raise money for Caring Matters Now. I’ve been to two of the fanciest dinner-dances ever and danced with Brendan Cole at one of them – a real highlight for someone who grew up dancing as much as I did! I took the Caring Matters Now mascot, Ronnie the Bear, on a round-the-world trip, raising awareness of Caring Matters Now and CMN. I’m now the Young Adult Support Contact, and I get to work with some of the most inspiring teenagers and young adults, supporting them in their transition to adulthood.

Regardless of whether or not you have surgery to remove your CMN, you still genetically have CMN and are a valuable member of our community, and Caring Matters Now will be there to support you in whatever way you need. There are so many things to consider when deciding if surgery is the right thing for you or your child, so I hope that this has helped in some way. If you’ve got any questions or just want to have a chat, I’m happy to help! My email address is katy@caringmattersnow.co.uk

You can read more Personal Stories here.