Tips for Managing Stress for AADC Deficiency Caregivers

Tips for Managing Stress for AADC Deficiency Caregivers

Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare disease that affects children from birth. Patients are often mentally and physically challenged.

For parents and caregivers, taking care of a child with a rare disease can be very challenging.

Here are some tips to help you manage stress:

Find a support group

It can be hard to find people who understand what you’re going through. Try to find (or build) support groups. You can check resources such as the AADC Research Trust and the Pediatric Neurotransmitter Disease Association.

Don’t lose touch with friends and family

Maintain connections with other people. Set aside time to catch up with friends and family (even if it is just 10 minutes for coffee once a week). Talk about what’s going on in their lives as well as yours.

Get enough sleep

Patients with AADC deficiency often have trouble sleeping through the night. For parents, this means it can be hard to get enough sleep. If possible, set up a staggered sleep schedule with your partner or another family member so that you can each get closer to 8–10 hours of sleep a night.

Exercise

Even a small amount of physical activity can help reduce stress.

Reduce alcohol, nicotine, and caffeine intake

Coffee, alcohol, and nicotine can all increase stress and reducing their intake can help you be more relaxed.

Take care of yourself

It’s easy to focus on all you have to do as a caregiver, but it is also important to take care of yourself.

 

Last updated: Sept. 11, 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 healthcare providers 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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