As a parent, learning that your child has a rare disease like Angelman syndrome can be very difficult. One of the first questions parents often ask is what the diagnosis means for their child’s future and how the disease is going to affect their life expectancy.
What is life expectancy?
Life expectancy is a best estimate of how long people will live. It is based on their date of birth, where they live, their gender, and other general factors. It does not refer to individuals, but to the population as a whole.
How does Angelman syndrome affect life expectancy?
Angelman syndrome is a rare disease, making it difficult to predict lifespan. However, current data suggests that the lifespan of Angelman syndrome patients is the same as someone without the disease.
What factors affect my child’s lifespan?
Many patients with Angelman syndrome experience epileptic seizures. Uncontrolled seizures can be very dangerous or even life-threatening.
Angelman syndrome also is associated with weak muscles from birth (hypotonia), which can make feeding difficult. In severe cases, this can lead to malnutrition; if not dealt with effectively that can reduce lifespan.
Many Angelman syndrome patients have delayed physical and mental development, making accidents and injuries more frequent and possibly reducing lifespan.
Planning for the future
For most parents, it is likely their child with Angelman syndrome will outlive them. Because Angelman syndrome is a lifelong condition, your child likely will need care past the point at which you can provide it. That is why it is important to plan for your child’s future. Who will take care of them? Will they live in a residential facility? Have you made financial provisions for your child’s needs?
Meeting with a financial adviser and talking to your child’s medical team can be the first step to answering those questions.
Last updated: Oct. 22, 2019
Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.