As all of us know that harlequin ichthyosis is a sever type of ichthyosis found in infants and causes dry, scaly skin. Babies born with harlequin ichthyosis are prone to rapid dehydration, infections, difficult breathing, and electrolyte imbalance which leads to high mortality rates in harlequin babies. But that being said recent studies and development in modern medicine given a rays of hope to the parents of harlequin babies. With proper nursing care and perfect treatment harlequin baby can survive through this rare genetic disorder. Dr. S. Rajpopat in her recent study report quoted “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. Compound heterozygotes appear to have a survival advantage.”
Here on this page we are linking out to the stories of harlequin ichthyosis survivor babies. Harlequin babies are super heroes who fight back such disease with help of their parents. We salute the harlequin babies and their parents for struggling with this rare genetic disease. If you are a parent of harlequin baby feel free to write your story on our portal. Just write a mail to us at info.harlequinichthyosis@gmail.com
Our main aim to build this page is make a complete resource for the parents of harlequin babies to know each other and build the hopes to struggle back the disease.
Harlequin Ichthyosis Survivors Stories -
Young Warrior Evan – Evan is harlequin ichthyosis survivor and a young warrior of De De. Mother of Evan (De De) blogs about details of Evans life and covered many helpful facts about harlequin ichthyosis. If you are a parent of harlequin baby you should check her blog here.
Evan born on 9th Jun 2010 with harlequin ichthyosis which was diagnosed when Evan was in woomb and De De expecting a baby. After the birth of Evan he went a long spell of treatment almost for 58 days in ICU. Now Evan is turning 3 yr and a super hero.
