| Baby suffering from rare skin disease needs urgent assistance |
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| Written by Shane D. Williams |
| Thursday, 26 November 2009 00:00 |
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Ichthyosis is a relatively common skin disease which causes the skin to become dry and flaky, like a fish. In extreme cases it causes outbreaks of lesions. There is no cure for Ichthyosis, but it can be maintained with proper treatment. The treatment is to moisturize the skin, usually with creams and ointments, it is best applied after bathing when the skin is still damp. However, the case of Ichthyosis that 4-year-old Tarell was born with is not that simple. Tarell Sutherland suffers from Bullous Ichthyosiform Erythroderma or Epidermolytic Hyperkeratosis. It is a rare skin disease in the Ichthyosis family affecting around 1 in 250,000 people. At birth, affected babies are called "enfant brûlé", from the French for "burned child", because they look red and have a fragile top layer of skin which easily forms blisters and wounds. Such injury can be caused by diapers, or just by touching the baby. The wounds should be properly cared for; otherwise, they are at risk from infection.Nicole said that it has been very difficult to see her child suffering so much. She said that as Tarell grew older the condition got worst. “It is very expensive to treat.” She said that she has to buy several lotions and creams just to ease the suffering of baby Tarell. In terms of medication, lotion and creams, she would have to spend up to “$400 a month” on Tarell. That is a large amount of money considering the fact that she has six other children to care for and “money is hard to come by”. What is worse is that the medications would only last for several weeks then he develops immunity. Oral retinoids have proven effective in treating this disease. Depending on the side effects, they may improve the quality of life. However, it is widely believed that the only true therapy for the disease is Gene Therapy. Over the last ten years scientists have been making considerable progress in the development of an efficient treatment. But until Gene Therapy solution becomes a reality, EHK sufferers must treat their fragile skin carefully. Most have learned that taking regular extended baths allows patients to care for their skin and keep it manageable. Baths that include sea salt seem to improve the process of softening and removing the thickened skin. |
Nicole McDougal is a mother of seven who has been struggling to cope with her 4-year-old son’s devastating skin infection. 4-year-old Tarell Sutherland has been diagnosed with Ichthyosis.