Importance of Support Networks for People Affected by AADC Deficiency

Importance of Support Networks for People Affected by AADC Deficiency
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A good support network is important for maintaining your physical and psychological health. Positive support from friends, family, peers, and co-workers can make you more resilient when you experience stress, depression, or anxiety.

Although specific studies about support networks in families affected by aromatic L-amino acid decarboxylase (AADC) deficiency have not been done, it is likely that, as with other chronic rare diseases, having a good support network is very helpful for patients and their families.

What is a support network?

A support network consists of all the people who support you. These can be friends, family, or co-workers. They are the people you call when you have good news to share, need help, or simply need to talk to someone you trust.

How can a support network help?

Parents of children with disabilities often experience stress, anxiety, and depression at higher rates than the general populace.

Researchers don’t know the biological mechanisms of why interaction with other people reduces stress. However, the effects seem clear: connecting with other people makes us fundamentally healthier, happier, and less stressed.

How can I find AADC support groups?

For many people, especially families facing a new diagnosis, it can be hard to find a support network. You may feel as if no one understands what you’re going through, or that you will be a burden on your friends and family because your child’s illness isn’t going away.

If you don’t have a support network in place, support groups can be a good place to start. Some people find support groups through religious organizations, their workplace, or through other involvement in the community. There also are online and local structured support groups available for families affected by AADC.

Not everyone needs or wants a structured support group. For many, calling a friend or family member a few times a month, meeting for coffee, or volunteering in the community provide sufficient social contact. However, if you don’t already have a support network and are too stressed to build one, a structured group may be beneficial. Talk to your child’s healthcare team about support groups in your area. Search for local support groups online, and check social media.

Here are a few links to AADC support groups (both online, and groups that may have local chapters):

 

Last updated: March 25, 2020

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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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