Medical Care & Treatments
Currently, there isn’t a cure or FDA approved treatments for ichthyosis. While research continues, FIRST will continue to share options to try that other members have found helpful, and sources of information for navigation the healthcare system.
Don’t forget to check out FIRST’s private Facebook group for parents for ideas and support. In Facebook, search for “FIRST Ichthyosis” and all of FIRST’s private Facebook groups will come up. Request to join the group(s) that you qualify for.
At this phase, meeting affected adults at FIRST conferences and one day meet-ups can also be helpful for practical advice and serve as a powerful visual of what lies ahead.
Don’t forget to check out FIRST’s private Facebook group for parents for ideas and support. In Facebook, search for “FIRST Ichthyosis” and all of FIRST’s private Facebook groups will come up. Request to join the group(s) that you qualify for.
At this phase, meeting affected adults at FIRST conferences and one day meet-ups can also be helpful for practical advice and serve as a powerful visual of what lies ahead.
Retinoid treatment may be beneficial to you and is something you can discuss in great detail with your physician. The use of retinoids to treat your ichthyosis should be an informed, negotiated agreement between you and your physician.
What is a Child Life Specialist?
See from FIRST’s former board president, Deb Vilas, affected with congenital ichthyosiform erythroderma (CIE). She is a Certified Child Life Specialist, who focuses in the area of “play” as she helps children and parents through hospitalization, loss and developmental challenges.
