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Treatment Guidelines for Cornelia de Lange Syndrome

Cornelia de Lange syndrome (CdLS) is a rare genetic disorder that causes different facial features, growth retardation, limb malformations, behavioral problems, and a variety of other symptoms. This condition can range from mild to severe and affects many parts of the body.

It is estimated that CdLS affects between 1 in 10,000 and 1 in 30,000 newborns. The exact number of cases is unknown because mild cases may not be diagnosed. Cornelia de Lange syndrome affects different people in different ways, and signs and symptoms can vary from person to person. If you wish to make donations for CdLS patients, then hop over to this website.

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When your child is diagnosed, their doctor will discuss a specific treatment plan with you and offer all kinds of services and support groups for your child's needs. Treatment focuses on symptom management to help children with CdLS live better lives. Babies benefit from early intervention programs to improve muscle tone, overcome feeding problems, and develop fine motor skills.

Additional formula or placement of a gastrostomy tube can help improve growth retardation. As the child grows, physiotherapy, occupational therapy, and speech therapy can benefit people with challenges. Surgery may be needed for bone abnormalities or congenital heart problems.

A psychiatrist can help manage the behavioral symptoms of the condition. Children may also need to see a cardiologist or ophthalmologist if they have heart and eye problems. The life expectancy of those with CdLS is relatively normal if the child does not have major internal abnormalities, such as heart defects.