1p36 Deletion Syndrome (cont.)

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What is the treatment for 1p36 deletion syndrome?

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Treatment is limited; symptomatic treatment is the usual treatment available. The heart, eye, muscle tone, and swallowing problems may be reduced by specialists in those fields; the earlier the diagnosis and treatment, the more likely these problems will become manageable or minimized. Some clinicians report good results with behavior modification training. Some affected individuals do well and can participate in many social events, but not all individuals are successful.

Compassion, patience and understanding of the extent of an individual's capabilities can allow an individual to have a loving and rewarding relationship with family and friends. Some affected individuals may be able to learn to communicate with body and sign language; this ability may take considerable effort and training on both the affected person and caregiver's part to develop.

What is the prognosis and life expectancy for 1p36 deletion syndrome?

Part of the prognosis for individuals with 1p36 deletion syndrome really depends on how much of DNA is missing from the p36 region. Some researchers now list p36 as p36.1 to p36.3, with p36.3 as the most amount of DNA missing and having the worst prognosis (poor, with severe symptoms). However, even these individuals may have some responses to the treatment listed above. Consequently, some individuals may have a relative good prognosis (a loving relationship with understanding and patient caregivers and family members) to a poor prognosis and early death from significant physical problems. 1p36 deletion syndrome is so new that data on projected lifespan is lacking. However, there are reports in the medical literature that some patients reach adulthood. How many of those that have the syndrome now and live on will help determine the life expectancy for future patients with 1p36 deficiency syndrome.


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1p36 Deletion Syndrome - Signs and Symptoms Question: Please describe the signs and symptoms that led to a diagnosis of 1p36 deletion syndrome.
1p36 Deletion Syndrome - Treatment Question: What type of treatment did your child receive for 1p36 deletion syndrome?

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