There is a high chance of finding a treatment. I wouldn’t be doing it if I didn’t think so and people wouldn’t be giving me money to fund the research. At the moment we are funded of course by Caring Matters Now which is fantastic, but we are also funded by some much bigger charities and research bodies. It’s always difficult to get funding but we have… this will at least give you some idea that scientists, in general, think that this is something that perhaps we could manage! It is not straight forward though and I will absolutely not guarantee that we will find treatments for CMN, but I don’t see why we can’t improve things, that we might be able to find better treatments for Melanoma and also potentially treatments for CMN.

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.

Do we mean we would make it lighter or less hairy? Or do we mean it would go away?

Any of those things would be great, at the moment we have nothing very effective for people who have large numbers of CMN or very big CMN. So we are keen on any of those angles. Ultimately, we would love for it to be something that we could actually make it go away; but if we can make it lighter, if we can make it calmer, if we can make it less itchy for some people, if we can make the hair growth less, if we can stop nevi from developing after birth, if we can reduce the chance of getting Melanoma, if we can reduce the chance of getting lumps and bumps- we would be happy! We are considering many of those things as we go in the most intelligent way possible and are aiming to try and really change the lives of people with CMN if possible.

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.

As far as we know, surgery does not reduce or increase the risk of Melanoma in CMN.

The answer to this is complicated, in theory if you have one small CMN and have surgery to cut it out, you remove the risk if it is totally removed. However, the risk of Melanoma in a small single CMN is very low, like for any mole on our body, so although it is true that this will reduce the risk in that one part of the skin, there wasn’t much of risk in the first place.

There is a higher risk of Melanoma in people who have abnormal MRI scans of the brain and in those who tend to have lots of CMN on their body. It is frequently not possible to remove all the areas of the CMN on somebody’s skin, where there is a risk, therefore we don’t think surgery reduces the risk either.

The question as to whether surgery increases the risk is an interesting one. Where skin is not completely able to be removed, we don’t know the effect of surgery and whether it could activate moles around them. For example, in the normal population people don’t remove half a mole, they take the whole mole out.

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.

We don’t have any published data about this as there hasn’t been enough cases for us to make any conclusions, but it is true that some people are trying to use drugs to potentially help. Data from cases such as this should be available within the next number of years.

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.

Yes, we are interested in all treatments which are being developed for Melanoma in the general population. As the numbers of Melanoma cases in CMN are low, there have only been smaller studies carried out, therefore we continually consider publications in the treatment of Melanoma generally which may inform our own research.

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.

Hairiness only needs to be treated if it is causing a problem (for example, making an area difficult to clean) or the child or family feel it looks better without hair. An electric shaver is the best way to remove hair and, clipping the hair short rather than completely shaving often avoids problems of itchiness with regrowth. Hair removal creams should not be used as they can irritate the skin.

Shaving does not affect the thickness or number of hairs that grow. Hair regrowth after shaving is generally relatively slow, and the new hairs will have exactly the same appearance and feel as the original hairs if they are allowed to grow long again.

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 possible but needs to be done regularly over a relatively long period and requires a general anaesthetic in children under teenage years. Electrolysis is slow and painful and is therefore not suitable for large areas.

To find out more about the support we offer through our team of Support Contacts and Regional Contacts, click here.

Back to FAQ