Living with CMN

CMN has an impact on the person but also on the family. They can experience psychological challenges as well as psychosocial challenges. In this section, you can find useful brochures, books, and patient stories.

People with CMN can and should enjoy a normal life. Affected children particularly, but all people with CMN, should use good sun protection – the same as we would recommend for all children. In particular, it is important to avoid sunburn. As a general rule: sun avoidance, coupled with good clothing protection, is more effective than sunscreen. The best sunscreens contain a reflection barrier such as titanium dioxide; select a high protection factor (SPF), ideally 25 or more, and with high UVA protection if indicated. Sunscreen needs to be refreshed every 2 hours or so, more often when swimming or sweating.

People with CMN should stay out of the direct sun as much as possible during the hottest hours of the day and in the hottest months of the year. The hottest hours of the day are 10 am-4 pm.  In most of the Northern Hemisphere, the hottest months of the year are April to October. For the Southern Hemisphere, October to April are the months in which to take care to reduce sun exposure.

• UV exposure is much higher when surrounded by water or snow, so special care should be taken when swimming outside or skiing.
• The sun is more harmful at higher altitudes.
• The sun remains almost as harmful when it is cloudy, so even if the day is cloudy, the CMN patient should wear appropriate clothing such as a sunhat during the hottest times of the year.
• Shade provides less protection when near water or snow, or when the weather is cloudy because the sun rays are reflected into the shade.
• The increased risk of skin cancer in people with CMN probably applies to their whole body, not just to their CMN.

Removing a CMN is a personal decision to be taken ideally after consultation with more than one informed, trusted physician.  Many patients who have a large CMN, or their families if they are too young to decide for themselves, prefer to leave it unoperated for various valid reasons. It is important to remember that a CMN cannot be removed without leaving a scar. Scarring may be minimized at the hands of a highly-skilled, experienced surgeon, and may also be remodeled at other points during a lifetime, so it is recommended you seek out a surgeon you will trust over a long period.