How Will AADC Deficiency Affect my Child’s Life Expectancy?

How Will AADC Deficiency Affect my Child’s Life Expectancy?

As a parent, learning that your child has a rare disease like aromatic L-amino acid decarboxylase (AADC) deficiency 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 an estimate of how long people will live. It is based on their date of birth, where they live, their gender, and other factors. It does not refer to individuals, but to the population as a whole.

How does AADC deficiency affect life expectancy?

AADC deficiency is a rare disease, making it difficult to predict life expectancy. Symptoms vary from child to child, so making general predictions about patients is not possible at this time.

What factors will affect my child’s life expectancy?

Many patients with AADC deficiency experience spells or spasmodic attacks that can last for hours. These spells may cause damage that could affect how many years a patient lives.

AADC deficiency is also 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, this can shorten lifespan.

Many AADC deficiency patients have delayed physical and mental development, making accidents and injuries more frequent and possibly reducing lifespan.

Some patients with AADC deficiency may have a cardiac arrest. Because patient numbers are low, it is unknown how frequently this affects patients.

Planning for the future

For most parents, it is likely their child with AADC deficiency will outlive them. Because AADC deficiency is a lifelong condition, your child may need care past the point at which you can provide it. This 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 is the first step to answering those questions.

 

Last updated: Nov. 13, 2019

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AADC 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.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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