2024-08-22 06:00:00
Moonboys with xeroderma pigmentosum (XP) require special and strict care to avoid the dangers of UV radiation. This article explores How to support Moonchild and the adaptations they need to provide them with a balanced and secure life.
Prevention and Protection: Living in the Shadow of UV
Xeroderma pigmentosum (XP) is a rare genetic disorder characterized by extreme hypersensitivity to ultraviolet (UV) radiation. Affected children are often called “moon children” and must live under strict protection from the sun. This disease can lead to serious illnesses such as skin cancer and irreversible eye damage. It is crucial to minimize exposure to sunlight or some artificial light. This requires an extremely restrictive lifestyle, but is crucial to slowing the progression of the disease.
The number of cases so far is low, with one child per million in Europe, and France will have about 100 cases by 2020.
Also Read – Xeroderma Pigmentosa (Child of the Moon)
Daily Steps for Moon Children
The Association Enfants de la Lune provides support to families and children affected by the disease. They provide all the information needed to maintain your child’s daily life.
this protective measures include:
Use generous amounts of very high-protection sunscreen (SPF 50+), wear sunglasses or a ski mask, a hat, gloves and protective clothing, as well as a ventilated UV mask. Windows of homes and vehicles must be equipped with UV filters, and light sources must be limited to ordinary incandescent lamps.
At home, children must live in an environment protected from all UV exposure and monitored using a dosimeter (such as LUVI). For family or sports activities, it must be planned to take place at night to ensure maximum safety, or in specially adapted venues, such as certain swimming pools or gyms certified by government agencies. CERN and other UV measurements (CERN).
Also Read – Skin Cancer
Lunar children’s regular medical follow-up
Regular monitoring by a healthcare professional is crucial for children with xeroderma pigmentosum. A dermatologist should be seen frequently, every two to three months, to monitor and treat any suspicious lesions.
These lesions can be locally destroyed or surgically removed, sometimes with skin grafting if necessary. In addition to dermatological monitoring, ophthalmic monitoring is critical for detecting and treating eye injuries.
Some forms of this disease may be associated with neurological and hearing impairments, which also require Appropriate screening and follow-up. Treatment for skin cancer is specific to the type of cancer detected and may include chemotherapy, radiation, surgery, or immunotherapy.
Oral retinoids may be used to prevent skin tumors, although tolerability is sometimes problematic. Precancerous lesions can be treated by applying 5-fluorouracil cream or cryotherapy. Finally, vitamin D supplementation is often needed to compensate for vitamin D deficiencies caused by lack of sun exposure.
Also Read – The Sun, we absolutely must protect children from its dangers!
Social life and education suitable for children of the moon
Despite the challenges of xeroderma pigmentosum, children on the moon can still go to school, thanks to Disability Law of February 11, 2005. However, this integration requires specific arrangements by educational institutions. Classrooms and canteens must be equipped with UV-resistant lights and UV-resistant windows.
A School Life Assistant (AVS) is often required to inspect equipment and monitor UV levels. But also support your child’s daily activities at school.
The social lives of these children and their families are profoundly affected by the need to protect against all UV exposure and to prioritize nighttime outings and activities. This reorganization of daily life can lead to a feeling of social exclusion.
Additionally, skin lesions and the cosmetic consequences of surgical procedures can be intolerable to children. Therefore, psychological support is a key element of care. It can help children and their families cope with illness. Other associations may also support the center, such as the Alliance for Rare Diseases.
Also read: Melanoma, number of cases set to double by 2040?
Treatment of xeroderma pigmentosum is based on strict prevention of UV exposure, intensive medical monitoring, and social and educational adaptation. Research advances, particularly in gene therapy, offer hope for future treatments, but in the meantime, protection and support remain the mainstay of care for lunar children.
Camille V.
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