What is Moon’s Child Disease?

THE Xeroderma Pigmentosum means a rare disease which is characterized by great sensitivity to the sun (photosensitivity) and visual disturbances. It mainly affects the inhabitants of Japan and the Maghreb and affects approximately 1 newborn in 1,000,000 in France. A group of patients is also affected in Mayotte. Nearly 50% of affected newborns show the first signs (severe sunburn) in the first few months. The main complication of this disease isand skin cancer Or eyes (the risk in these people is multiplied by 1,000). Children of the Moon is the name of the association of patients and parents of children with Xeroderma Pigmentosum.

What is the cause of the disease of the children of the moon?

Xeroderma Pigmentosum is a genetic disease which results from a malfunction of genes. “Each of the XP elements (AG and V) is made by a gene that we have in duplicate: a paternal copy and a maternal copy. Thus, each of us receives a copy from each of his parents. It is the malfunctioning of both copies at the same time that causes Xeroderma Pigmentosum, says Professor SMAIL HADJ-RABIA, dermatologist-geneticist at the Necker-Enfants Malades hospital. Dermatology department reference center for rare skin diseases. This mode of transmission is called recessive“. It is called

• XP-A when the two XP-A copies do not work
• XP-B when these are the two XP-B copies that do not work.

What are the symptoms and consequences?

The accumulation of accidents on the DNA will lead malfunction of DNA and genes. This will induce different symptoms depending on the type of Xeroderma Pigmentosum. “In the most common form in France (XP-C), the main manifestations are photophobia (children are bothered by the light), skin pigmentation, dry skin and increased risk of cancersfirst cutaneous, then other organs”, details the specialist.

Diagnosis is based on medical consultation, most often in a dermatologist, an ophthalmologist or a neurologist.

Is there a treatment to cure the disease of the children of the moon?

This isan incurable diseaseonly absolute sun protection improves symptoms and increases life expectancy. There is always an interface between the patient and the sun. This is essential.

What is the life expectancy in case of illness of the children of the moon?

Life expectancy varies from one form to another. “The severity of the disease is currently linked to the risk of occurrence of cancers of organs other than the skin. (XP-C) or neurological manifestations that appear and worsen gradually (XP-A). Unfortunately, few adults over 40“, informs the dermatologist-geneticist.

Thanks to Pr SMAIL HADJ-RABIA, dermatologist-geneticist at the Necker-Enfants Malades hospital