Hi, I’m Chantelle and I was born with Congenital Melanocytic Nevi in 1989. My Journey with CMN has had its up and down moments, as anyone with a lifelong condition will tell you. My mother was 17 when she had me and remembers me being rushed off to the Paediatric Intensive Care Unit due to the midwives and doctors being unfamiliar with my condition. After a few scans once it was established that I had no conditions effecting my brain or other organs I was discharged home.
My main CMN is a bathing trunk type formation and primarily affects my right leg. I also have numerous smaller moles (sometimes referred to as satellites) all over my body. Also, a large mole of my right cheek was successfully surgically removed when I was six months old. This was my first operation of many.
My early treatments were chemical peels. These treatments, in a nutshell, burn away the top layers of skin. As you can see from the photo, my skin was quite red after the chemical peels. However, my CMN eventually reverted to its original brown shade making no difference to the overall appearance.
I was referred on to St Thomas’s hospital in London where I had the rest of my treatment as a child. I had numerous skin graphs in an attempt to minimise the CMN. Skin was primarily removed from my lower legs, abdomen and back. I am left with thick scar tissues in these areas. I also was given liposuction at one stage where I had put on a little weight, and they wanted to remove the looser skin from my tummy and place it on my leg. Unfortunately, some of my surgeries were complicated and things didn’t always go to plan. I had to have my belly button permanently stitched together which made it look like a vertical line. After one particular surgery a surgical instrument was left within me after they had closed my skin, so my body attacked it and declined the skin graph, resulting in large necrotic tissue on my thigh which is now a 10cm by 5cm scar with muscle damage.
At the age of 11, before I started secondary school, my mum felt that enough was enough and declined any further surgeries. I will always remember the kind and caring nurses at St Thomas’ Hospital, the entertainers that would come to the ward (the clown scared me a bit!) and my mum pushing me in a wheelchair along the Thames watching Big Ben chime. I will forever be grateful for the care they gave me.
My CMN has never been a taboo subject and as a family we have always had open discussions around anyone and everyone. This helped me to not feel different from anyone else and I was never ashamed of my condition. Through my teen years I was very conscious of my arms and legs and would never be seen in a short-sleeved top or skirt. As I have grown this insecurity has drifted away and I am comfortable in my CMN skin.
My journey through the healthcare system has moulded me into my chosen career path. I was a carer for many years. I was eventually employed in the NHS working in a paediatric blood test clinic. Children would come in and sometimes openly ask me questions about my moles, sometimes their parents would tell them to not ask about the lady’s ‘spots’ but I was more than happy to answer. I would tell them that I’m lucky enough to be born decorated, kind of like a Christmas tree but I get to be decorated all the time! They would usually accept this answer. Sometimes I would use my moles to my advantage, when attempting a blood test on an anxious child it’s good to find something to distract them, I used to ask if they can count all the moles on my arms (there’s quite a few so it would take a while), before they knew it the blood test was over. There’re always those moments where you come across people unfamiliar with CMN which is bound to happen as we are unique and rare. An elderly gentlemen brought his grandson into my clinic and before anything he asked me if what I had was ‘catching’, I assured him that if I had anything ‘catching’ I wouldn’t be working in the NHS let alone with children and gave a brief description of what CMN is; the appointment carried on with nothing more said about it. My career progressed and I am now a Community Nurse.
As I have grown, I expected to experience changes with my CMN, when I notice such things, I request my GP to send a referral to a dermatologist for assessment which is always done. Over the years I’ve seen many dermatologists, I recall one instance where a Dermatology Consultant had a medical student in clinic with him, they were asking me questions at first which I will always happily answer. When it came to assessing my skin, whilst mostly naked, it was like I was a specimen and me as a human was forgotten. The consultant was discussing me to the student, which I understand certain things must be explained for their learning, but I was just told to move into different positions so they could see more. He was fascinated by this one particular mole which is in the middle of the bottom of my foot, and he was explaining to the student how rare it is to have a mole there, I felt like telling him my whole body is ‘rare’ but I left it.
Over the last 5 years I have had recurring boils, spots and abscesses appear within my CMN, after seeing different dermatologists, having biopsy’s taken, being on antibiotics and washing with different creams and ointments, I requested the GP send me to the Mosaic Clinic in the Department for Rare Diseases back at St Thomas’. On my appointment day I got a bit emotional entering the hospital as I hadn’t been back since I was a child, the consultant was great during my consultation and informed me that I have HS (Hidradenitis Suppurativa). It was great to finally get a diagnosis, this is usually located in people’s armpits and groin area, but I guess due to the hair follicles within the birthmark it is coming out there. Oh, remember my belly button which I mentioned was stitched together, I kept on getting infection after infection inside it, so I ended up getting my bellybutton removed in 2021, so I now have a smooth belly!
If I was to give anyone advice it would be to embrace your uniqueness! If we were all born the same the world would be boring. To the parents of young ones with CMN, never make it a subject that is too serious to discuss, be open and honest with your child and let them take the lead of their CMN journey. There may be times where they struggle, just be supportive and a listening ear. Teenagers with CMN – you’re gorgeous! During my teen years I felt unattractive at times, but I have an amazing partner and two beautiful and crazy sons. Those feelings don’t last forever. My fellow adults with CMN lets pave the way with confidence and pride of how we were born and show the younger generations that CMN doesn’t hold you back from anything!
