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.
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
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.
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