FIRST response to the “Lucas Moura” Community Page on Facebook of Harlequin ichthyosis baby
In response to the photo taken from FIRST’s website of a baby affected with Harlequin ichthyosis, on the “Lucas Moura” Community Page on Facebook:
Harlequin ichthyosis is the most severe form of autosomal recessive congenital ichthyosis (ARCI). There are between 200-400 cases of babies born with moderate to severe forms of ichthyosis each year, in the United States alone.
Harlequin ichthyosis is treatable and survivable; a recent study published in 2011 in the Archives of Dermatology concluded, “Harlequin ichthyosis should be regarded as a severe chronic disease that is not invariably fatal. With improved neonatal care and probably the early introduction of oral retinoids, the number of survivors is increasing.”
The Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) is the only national non-profit foundation in the United States dedicated to helping those affected by all types of ichthyosis.
Posts such as this do nothing to help those affected by Harlequin ichthyosis. Those individuals who are truly concerned about those affected by Harlequin and other types of ichthyosis are encouraged meet some of the wonderful people affected with ichthyosis, learn about ichthyosis, and make a donation to help FIRST fulfill our mission to educate, inspire, and connect those touched by ichthyosis.