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?
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
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.