This documentary portrays people with rare skin conditions. It includes a 5-year-old with Epidermolysis Bullosa (EB), which can be lethal, and a 22-year-old with a mysterious condition (Lamellar ichthyosis) that’s causing fish-like scales to grow all over his body.An estimated 50 in 1 million live births are diagnosed with Epidermolysis Bullosa (EB), and 9 in 1 million are in population. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes.
Current clinical research at the University of Minnesota has included a bone marrow transplant to a 2-year-old child who is one of 2 brothers with EB. The procedure was successful, strongly suggesting that a cure may have been found. A second transplant has also been performed on the child’s older brother, and a third transplant is scheduled for a California baby. The clinical trial will ultimately include transplants to 30 subjects. However, the severe immunosuppression that bone marrow transplantation requires causes a significant risk of serious infections in patients with large scale blisters and erosions. Indeed, at least two patients have died in the course of either preparation for or institution of bone marrow transplantation for Epidermolysis Bullosa, out of a small group of patients treated so far.
Lamellar ichthyosis, also known as ichthyosis lammellaris and nonbullous congenital ichthyosis, is a rare inherited skin disorder, affecting around 1 in 600,000 people. As with all types of ichthyosis, there is no cure but the symptoms can be relieved with: Moisturizers, Prevention of overheating, Eye drops (to prevent the eyes from becoming dried out) and Systemic Retinoids (Isotretinoin and acitretin are very effective, but careful monitoring for toxicity is required. Only severe cases may require intermittent therapy.)
The scales often tile the skin and may resemble fish scales. The eyelids and mouth may have the appearance of being forced open due to the tightness of the skin. There can be associated eversion of the eyelids (ectropion). The condition can resemble but is different from harlequin type ichthyosis.