a. Fragility
Many CMN are more fragile than normal skin and can therefore tear more easily if they are knocked or scraped. However, they do not bleed any more than normal skin, and they tend to heal well with minimal scarring.
b. Dryness
Some CMN are drier than the surrounding skin so for those it is sensible to wash without soap, for example using a cream wash suitable for eczema, and if still dry can be moisturised regularly (your doctor can advise you on this).
c. Itch
Most CMN are not itchy. However occasionally, CMN are very itchy. This which can be due to dryness or eczema in the CMN, so it is sensible to get a doctor to look at this and in these cases treatments for eczema can help with the itch, and usually this type of itch gets better over the first decade of life. However, there is a particular type of CMN which is extremely itchy because of the CMN itself rather than due to dryness/eczema. These patients usually have lots of nodules (lumps) in the CMN, which are often and hot and red.
d. Underlying decrease in fat and muscle bulk
This is usually only seen with extensive CMN, particularly those on the buttocks or limbs. The development of the CMN seems to interfere with the development of the layer of fat and sometimes also the normal muscle bulk. This can result in the CMN appearing to be lower than the skin surface and the limb, buttock or side of the face appearing somewhat thinner than normal. The thinner area however functions usually just as it would normally – for example a thinner leg still works perfectly well.
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.
e. Psychosocial
Living with CMN or parenting a child with CMN can feel quite overwhelming and stir up a whole range of emotions such as fear, anxiety, and worry. As a charity, we want to support our members to reach their full potential and help them to develop key social and emotional life skills.
Please do contact Caring Matters Now if you require Psychosocial support.
Psychological support is also available in the NHS usually via specialist clinics such as in the Rare Disease Clinical Network for Mosaic Disorders. This Rare Disease Collaborative Network (RDCN) focuses on the severe end of the spectrum of these diseases, this clinic can be accessed by adults with CMN at Guys Hospital and for children with CMN through GOSH.
