a. Hairiness

Hairiness only needs to be treated if it is causing a problem (e.g. making an area difficult to clean) or the person with CMN feels it looks better without hair. An electric shaver is best, and clipping the hair short rather than completely shaving often avoids problems of itchiness with regrowth. Hair removal creams etc should not be used as they can irritate the skin. Shaving does not affect the amount or thickness of hairs that grow. Hair regrowth after shaving is generally slow and the new hairs will have exactly the same appearance and feel as the original ones. Most parents find that they do not need to shave an area more often than once every couple of weeks in order to maintain a satisfactory appearance. Laser hair removal is not advised in CMN because of the effect the laser may have on the surrounding CMN cells. Electrolysis is slow and painful and is therefore not suitable for large areas, and may also have effects on the surrounding CMN cells.

b. Should nodules always be removed?

It depends on the person and on the nodule as well so that is a question that has to be answered on an individual basis by your doctor.

c. Laser therapy

Does Laser Therapy work for CMN and does it work for hair removal?

We did a study across many years where we looked at the colour of CMN overtime in the same people. We had a large number of people, took photographs, and recorded the colour of their CMN with a colour measurement machine. We looked at what happened to their CMN, in particular we looked at the CMN of people who had had it lasered or treated by another type of removal, like dermabrasion or curettage. These are techniques where the top of CMN is removed, scraped away and the bottom is still there. Laser does the same, it takes away the top and leaves the rest.

We were particularly interested in people who had been treated in part, part of their CMN had been treated and the other part had not. This happens, for example, when sensitive areas in the nappy area are not treated and the other parts are. However, the CMN is joined up, so in those cases we were able to show that laser therapy did not make any difference to the colour in the long run in the area that was lasered. There was a temporary lightening but then the colour of the CMN would come back, not always as dark as it had been at birth. When we looked at the parts that were not lasered, they had ended up exactly the same colour as the lasered area.

We realised the eventual colour of the CMN is actually dictated by your body’s own skin colour. If you are someone with a darker skin tone your CMN will be darker at birth and will probably stay dark. If, however you are somebody who is born with lighter skin then your CMN is often very dark at birth but will gradually lighten overtime. It looked like these treatments had made the CMN lighter, but this lightening would have happened anyway.

We don’t think any of these treatments work for colour, we don’t think they are good treatments for CMN.

We do not have data on whether these treatments can reduce lumps or bumps or prevent a CMN from developing complications or cancer.

This answer has been taken from a Q&A zoom session with Professor Veronica Kinsler, recorded in April 2020.
Please note this is an accurate answer at the time of recording. However, due to the continuing advancement in CMN research, it is important to seek current guidance and advice from a medical professional or by contacting Caring Matters Now. You can watch the full recorded session here.

Can CMN be treated with laser or surgery?

The decision to have surgery has to be made on an individual basis, and very much depends on whether the surgeons think they can improve the appearance.

In cases of very large CMN, surgery if often not possible. In other cases, the following points should be considered:

  • Many CMN will lighten spontaneously to at least some degree over a period of year. This can be monitored with repeat photographs.
  • Surgery has not been shown to reduce the risk of melanoma in the child.
  • Early surgery has not been shown to be advantageous. No routine surgery should take place before the age of 1 years.
  • The site of the CMN is very important. For example, the child may get more benefit if a CMN on the face is removed, compared to one hidden on the scalp.
  • The size of a CMN is very important – we have found that children with larger CMN were less pleased with the cosmetic result than those with small lesions which could be completely removed.
  • The number of naevi is important, in particular if the child has a tendency to develop lots of new ones as this may reduce the benefit from removing some.
  • Whether you want your child to take part in the decision, in which case it is better to wait until your child is old enough to consider the options available.
  • What is involve in the type of surgery being offered – this will depend on the individual case.

If a CMN can be removed, for example by excision or serial excision (more than one operation but relatively straight-forward), the cosmetic benefits may easily outweigh the small risks associated with any operation. However, if a CMN is in a difficult place for removal, or if it is too large ever to be removed completely, then level of possible risk increases. It is very important in such cases, you should take time to decide about surgery, particularly to see if the CMN is lightening over time.

Laser therapy cannot be used to treat CMN. It will often lighten the colour, but this is a temporary phenomenon, and the CMN will gradually (or sometimes rapidly) grow pigment again. Sometimes it appears that the colour after repigmentation is lighter than it was at birth, but we now know that this is because in that individual the CMN was going to lighten anyway, and the final colour is connected the person’s own hair and skin colour, not to the colour it was at birth (or to any longterm help from laser). The same applies to dermabrasion or curettage, which are other superficial removal techniques.

Is laser therapy useful for hair removal?

Laser hair removal will work better if your skin is light and your hair is dark. In a CMN, the background colour is usually dark and the hair is dark or very similar at least. There’s a risk that when the laser is applied to the hair that it will also burn the skin itself which we don’t think is a good idea.

We wouldn’t recommend having laser hair removal for CMN, we don’t think it would work very well. It is always possible to get opinions from a laser hair removal professional. If you wanted to do it, we would strongly suggest using a small test patch to see if it was going to work without burning the skin. Many laser therapists will think that laser would be good for the whole CMN, in reducing colour, but we know that’s definitely not the case.

This answer has been taken from a Q&A zoom session with Professor Veronica Kinsler, recorded in April 2020.
Please note this is an accurate answer at the time of recording. However, due to the continuing advancement in CMN research, it is important to seek current guidance and advice from a medical professional or by contacting Caring Matters Now. You can watch the full recorded session here.

What are ‘normal’ changes within CMN?

Everybody’s CMN is unique, meaning they vary in size, texture and shape. CMN may change over time. Changes within CMN cannot be defined as normal or abnormal without the medical assistance of a doctor who will assess the changes. If you notice changes within your CMN which you are unsure about, please see your doctor or dermatologist.

d. Is there an effective treatment for CMN?

Currently, there is no effective treatment for CMN. As a charity we partner with Professor Kinsler and her research team, at Francis Crick Institute, London. In recent years, with YOUR support, Professor Kinsler’s team have found the CAUSE of CMN and now they are working towards finding an effective treatment for CMN which give choice of treatment to those with CMN. To do this they use skin biopsies, donated by our members, to study the behaviour of CMN cells.
Through biopsies their study found that the skin cells containing BRAF gene fusions, which is a rare cause of CMN, were more active than those containing NRAS or BRAF spelling mistakes. This could explain why some patients with BRAF fusions in particular develop lumps, as the cells with the fusions divide excessively. Professor Kinsler’s team used these cells to test the effectiveness of Trametinib, a medicine known to regulate cell division, as a potential treatment.
They found that treating the cells with Trametinib reduced their excessive division, returning them to a more normal behaviour. A small group of patients have been involved in this medical trial so far. The treatment has been effective in reducing lumps and itch and has been helpful to the patients and their families, however this is not an effective treatment for all expressions of CMN and does not reduce the risk of melanoma.

In June 2024, Professor Kinsler’s team published a Research Breakthrough.

e. Psychological issues

Children who grow up with a prominent CMN or many CMN may well have problems adjusting to their visible difference, particularly during teenage years. This, however, is a very individual thing, and varies depending on the child’s personality, and on the support from family and friends.

It would be ideal if we were able to offer all children at risk some degree of automatic counselling during their childhood. At GOSH we currently have a psychology service available. However, not all families want psychology input, and not all hospitals have this facility.

We actively promote support group involvement for both parents and children, as well as recommending psychological support before transition to secondary school, and learning key techniques for coping with visible difference.

Caring Matters Now (CMN) support our members through use of support resources and tools which have been designed to improve confidence, self-esteem, tackle anxious feelings and equip people with CMN with the skills they need to live well with CMN. We work in partnership with several organisations who either provide and develop support resources for people with a visible difference, including Changing Faces, YP Face IT and Face Equality International. We also work closely with the Centre for Appearance Research (CAR) University of West England, Bristol, who developed our Online Teens Resource alongside some of our young people. We continue to partner with the work of Research Fellows in Great Ormond Street Hospital (GOSH) who study the Psychological impact of living with CMN within Professor Kinsler’s clinic.

*Please note, our support is not intended to be used as an intensive mental health intervention. If you need further support, please contact your GP.
**If you are considering surgery or treatment, and your primary medical contact is not Professor Kinsler, we recommend that you seek a 2nd opinion from Professor Kinsler and her team. We also have a Surgical Support page you can visit on our website.

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