Questions about the CMN and your body

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.

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 can’t stop them appearing at the moment. This is very variable person to person, people will have their own rate of appearance. If you are somebody who develops a lot of new CMN in the first year of life, you may continue to develop new ones for a while. People who don’t develop many in the first year or two of life, don’t seem to suddenly start getting them later. This depends on your own unique pattern, the best predictor we have at the moment if how your nevi have behaved so far.

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, hair can become white or grey before the rest of the hair, this can happen in childhood and as people get older it can happen more. Hairs on CMN are different, behaving differently as they are somehow under the influence of the mutation responsible for CMN. They grow longer than ‘normal’ hair, they are usually darker and are often more coarse. Sometimes they’re lighter, which is rare, but can happen.

Most people tend to shave the hair. Hair on CMN could be chemically coloured, we would suggest that it would not be coloured directly on to the CMN, avoiding direct scalp application. We would advise you to inform your hairdresser as they will have other methods to avoid the colour touching the 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.

Sometimes when the CMN is on your legs, one leg can be thinner than the other because the fat is less well developed in that area. This can also be because the muscle is less well developed there too but practically speaking, it doesn’t seem to matter. To our knowledge, one member has reported a feeling of a reduction of power, but in general it’s not something people report as a problem.

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.

The most common problem with neuro development is a delay in speech. For children with more than one CMN it is very common to have a delay in speech in the first few years of life. This usually presents itself as a problem with expressive speech- the child’s ability to express what they’re saying whenever they usually understand everything.

This usually catches up with time, as a rule of thumb it could easily be delayed six months but then would catch up. If this problem persisted over time for longer than six months, we would encourage a parent to seek medical advice.

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.

Children without CMN can develop 3-5 moles per year in childhood but we also know that it’s possible to develop new CMN overtime in the first few years. We tend to include the CMN which is present at birth.

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.