The “moon children” are affected by a rare skin disease called Xeroderma Pigmentosum. But what are the symptoms and causes of this pathology? Explanations.
- Xeroderma Pigmentosum was first described in 1870 by Doctor Kaposi, a Hungarian dermatologist.
- In France, the number of patients affected by this pathology is estimated between 70 and 80.
- Certain artificial lights, in particular neon and halogen, also emit harmful UV radiation from which patients must be protected.
“When I was little, my parents told me: it’s simple, you go out, you die”. This was declared to the media Konbini, Nihal, a young woman of 23 years. This patient is a “moon child”. In other words, she has “zero tolerance” to the UV rays of the sun and must be equipped from head to toe when going out and moving outside. In the interview, she says she has Xeroderma Pigmentosum (XP).
Xeroderma Pigmentosum: one child born in a million in Europe
It is a rare hereditary disease which is characterized by extreme sensitivity to the sun and ultraviolet rays. It affects both girls and boys and concerns one in a million births in Europe, according to the University Hospital of Bordeaux. “Its frequency is higher in countries with frequent consanguineous marriages, which facilitate the transmission of recessive traits. Most of the patients followed in France are from the Maghreb”, adds the hospital center.
According to theOrphanet, if the children of the moon are not completely protected from the light of the sun, they undergo an accelerated aging of the skin. These patients also inevitably develop eye and skin lesions that can lead to skin cancer.
Children of the Moon: What Causes Xeroderma Pigmentosum?
According a study published in 2014, this skin disease is associated with a defect in the deoxyribonucleic acid (DNA) nucleotide excision-resynthesis repair system genes, for the first seven genetic groups (GA), and an abnormality transcription genes for the eighth group. In a report, the High Authority for Health (HAS) indicates that XP-C is the most common form in France. To develop this condition, children must receive both mutated genes from parents.
Xeroderma Pigmentosum: how does it manifest?
The intensity of the manifestations and the age of onset of the clinical signs vary from one form of Xeroderma Pigmentosum to another. But, in most cases, skin, eye and neurological damage occurs. In general, children of the moon suffer from severe redness after even minimal exposure to the sun, from the first months of life.
Freckles also occur on the face and neck of patients. According to the Orphanet, their skin is usually very dry and thin and irregular brown spots gradually appear on all exposed parts of their body.
“In the absence of photoprotection, the first skin cancers (especially basal cell carcinomas) are diagnosed around the age of 4 years. Ocular involvement first associates early photophobia and lacrimation. Conjunctivitis, dry eye syndrome or still cataract are later complications”, specifies the HAS.
What are the treatments for Xeroderma Pigmentosum?
To date, there is no treatment that can cure this condition. The only way to reduce skin and eye complications is to avoid exposure to daylight as much as possible and at all times. Clearly, patients can go out and carry out activities without risk only at night.
When patients are outdoors, they should wear wide-brimmed hats, gloves, long clothing and closed collars to block out UV rays and protect their skin. “Each uncovered part of skin must be coated with ‘extreme screen cream index 50+’, and this every 2 hours. The eyes must also be protected by special glasses or a mask filtering UV rays”, recommends the Orphanet.
