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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved. Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Inclusion on this list is not an endorsement by GARD.
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A Parent's Guide to Harlequin Ichthyosis

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Harlequin ichthyosis sufferer says 'people ask me if I've been in a fire' | Daily Mail Online

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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Harlequin ichthyosis

We include products we think are useful for our readers. If you buy through links on this page, we may earn a small commission. 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.
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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. These skin abnormalities affect the shape of the eyelids, nose, mouth, and ears, and limit movement of the arms and legs.
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