With improved neonatal facilities, infants born today have a better chance of living longer, healthier lives.
But early, intensive treatment is vital.
A newborn with Harlequin ichthyosis requires neonatal intensive care, which may include spending time in a heated incubator with high humidity.
Tube feeding can help prevent malnutrition and dehydration. Special lubrication and protection can help keep eyes healthy.
Other initial treatments might include:
- applying retinoids to help shed hard, scaly skin
- applying topical antibiotics to prevent infection
- covering the skin in bandages to prevent infection
- placing a tube in the airway to help with breathing
- using lubricating eye drops or protective devices on the eyes
There’s no cure for Harlequin ichthyosis, so management becomes a crucial part of the equation after initial treatment. And it’s all about the skin.
Skin protects the body from bacteria, viruses, and other harmful elements in the environment. It also helps to regulate body temperature and fluid loss.
That’s why keeping your skin clean, moist, and supple is so important for children and adults with Harlequin ichthyosis. Dry, tight skin can crack and become vulnerable to infection.
For maximized benefit, apply ointments and moisturizers right after a bath or shower, while the skin is still moist.
Look for products containing rich moisturizers, such as:
- alpha-hydroxy acids (AHAs)
Some people in the ichthyosis community recommend AmLactin, which contains the AHA lactic acid. Others recommend adding a few ounces of glycerin to any lotion to help it keep the skin moist for longer periods of time. You can find pure glycerin in some pharmacies.
Oral retinoids help with thick skin. You should also protect the skin from sunburn and try to avoid extreme temperatures that can irritate the skin.
If you have a school-aged child, make sure to let the school nurse know about their condition and any treatment they may need throughout the school day.