What is the life span for a baby of 1 year suffering from leukodystrophy, along with other 18q syndrome anomalies?

Question

Leukodystrophy is not a single condition, but refers to a group of conditions that mainly affect the white (? leuko?) matter of the brain and the spinal cord. The primary leukodystrophies affect myelin production or breakdown. Myelin is the substance that surrounds and insulates the nerve fibres in the nervous system. When myelin is damaged, the underlying nerve tissue cannot operate in the regular way. Leukodystrophies are usually progressive conditions, which means they get worse over time. They cause loss of normal brain functions. Life expectancy depends on the type of leukodystrophy. Treatment for leukodystrophy currently, leukodystrophies cannot be cured. Stem cell therapy and bone marrow transplantation have each been tried in some cases. However, the benefits depend on the timing, age of onset and severity of symptoms. Therapies such as gene therapy and enzyme replacement therapy are under investigation. Treatment is mainly supportive and may include: physical therapy occupational therapy psychological counselling family counselling (including genetic counselling) medications (for example, medications for seizures. Things to remember leukodystrophy refers to a group of inherited disorders that affect the white matter of the brain. It causes loss of normal brain functions. Onset of symptoms is variable. There is no cure, but supportive treatment can help manage some of the symptoms. Most children with leukodystrophy will have significant problems with walking, talking, and activities of daily living. Some children with leukodystrophy will have a progressive downhill course in their abilities and will have a shortened life span. We encourage you to discuss your child's prognosis with your provider. Because children with leukodystrophy usually have significant medical problems, the impact on the family will be significant. A support group (see below) may be extremely helpful for you and your family. No one can predict the life span. Please ask personally for more doubts.

Sajeev · Accepted Answer

Leukodystrophy is not a single condition, but refers to a group of conditions that mainly affect the white (? leuko?) matter of the brain and the spinal cord. The primary leukodystrophies affect myelin production or breakdown. Myelin is the substance that surrounds and insulates the nerve fibres in the nervous system. When myelin is damaged, the underlying nerve tissue cannot operate in the regular way. Leukodystrophies are usually progressive conditions, which means they get worse over time. They cause loss of normal brain functions. Life expectancy depends on the type of leukodystrophy. Treatment for leukodystrophy currently, leukodystrophies cannot be cured. Stem cell therapy and bone marrow transplantation have each been tried in some cases. However, the benefits depend on the timing, age of onset and severity of symptoms. Therapies such as gene therapy and enzyme replacement therapy are under investigation. Treatment is mainly supportive and may include: physical therapy occupational therapy psychological counselling family counselling (including genetic counselling) medications (for example, medications for seizures. Things to remember leukodystrophy refers to a group of inherited disorders that affect the white matter of the brain. It causes loss of normal brain functions. Onset of symptoms is variable. There is no cure, but supportive treatment can help manage some of the symptoms. Most children with leukodystrophy will have significant problems with walking, talking, and activities of daily living. Some children with leukodystrophy will have a progressive downhill course in their abilities and will have a shortened life span. We encourage you to discuss your child's prognosis with your provider. Because children with leukodystrophy usually have significant medical problems, the impact on the family will be significant. A support group (see below) may be extremely helpful for you and your family. No one can predict the life span. Please ask personally for more doubts.