“The tight skin makes it difficult for them to shut their eyes sometimes. We put Vaseline around her eyes at night so they close their eyes more easily.” – FIRST Parent

“We apply Aquaphor around the eyes twice a day.” - FIRST Parent, Camilla Strickler

“We have had great success with a night time eye ointment applied directly to the skin around the eyes. Previously our daughter experienced styes with we applied her regular body lotions near her eyes. Wash hands well before applications. Also when she was very little I would wipe her eye area with a warm, wet washcloth and apply the ointment immediately afterward.”
– FIRST Parent, Carolyn Straub McTiernan

What is ectropion?

Babies born with ichthyosis may have a mild to severe case of ectropion. Ectropion is a condition whereby the skin around the eyes pulls tightly causing the eyelids to slightly turn outward. It is common in ichthyosis and there are treatments to make your child more comfortable, however your child should be evaluated for the presence of ectropion, which is commonly seen in cases of collodion baby or Harlequin Ichthyosis. If present, it is recommended that your doctor consult with an ophthalmologist. Infants with ectropion are at risk for exposure keratitis, or inflammation of the cornea, so ensuring that the eyes are adequately lubricated is essential. This can be accomplished with hourly artificial tears or ocular lubricant. Topical antibiotics may be required for treatment of conjunctivitis or corneal abscess. As always, it is critical to consult with your doctor before pursuing any type of medical treatments for your child.

And although ectropion almost universally improves beyond the neonatal period, it can persist throughout life and medical consequences including keratitis, conjunctivitis, inflammation of the conjuctiviti and epiphora, accessing watering of the eye, can ensue.

As your child ages, if the ectropion persists, there are surgical procedures available to them, as well as topical retinoid treatments. It is critical to consult with your physician and medical team before pursuing new treatment for your child.

Tele-ichthyosis - Since ichthyosis is a rare condition, sometimes your healthcare practitioner will need guidance from ichthyosis medical experts. Remember that FIRST has a Tele-ichthyosis portal, where medical staff can upload questions and photos and an ichthyosis expert will respond as soon as possible. If it is an urgent matter please call the FIRST office and we will reach out to a member of FIRST's MSAB.

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