Harlequin disease adult

Doctors always cautioned me against getting pregnant, but all I've ever wanted to do was be a mom. Their fears weren't completely unfounded: I was born with Harlequin ichthyosis HI , a rare genetic disorder that causes severe skin abnormalities, and pregnancy is extremely dangerous for me. My thick skin doesn't stretch at all and often breaks into painful cracks. I can't regulate my body temperature, which pregnancy hormones make even worse. Plus, pregnancy makes it super easy for me to get an infection, since it suppresses my already-low immune system. I always knew pregnancy meant huge risks, but those risks were worth it to me.
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Teenager Hunter Steinitz's agony over rare skin condition harlequin ichthyosis

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I'm the First Mom with Harlequin Ichthyosis - Stephanie Turner Essay

If you buy something through a link on this page, we may earn a small commission. How this works. Harlequin ichthyosis, sometimes called Harlequin baby syndrome or congenital ichthyosis, is a rare condition affecting the skin. The skin of a newborn with Harlequin ichthyosis is covered with thick, diamond-shaped plates that resemble fish scales. On the face, these plates can make it hard to breathe and eat. Harlequin ichthyosis is a serious condition, but medical advances have greatly improved the outlook for babies born with it. Babies with Harlequin ichthyosis are usually born prematurely.
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A Parent's Guide to Harlequin Ichthyosis

Harlequin ichthyosis is a severe genetic disorder that mainly affects the skin. Infants with this condition are born with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks fissures.
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By Lizzie Parry for MailOnline. She was born with an extremely rare genetic condition that left her skin red raw, and severely cracked. Doctors warned she was unlikely to survive the first few days of life. But at the age of 23, Stephanie Turner is now the oldest person in the US to live with Harlequin ichthyosis.
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