Episode 28: Understanding CDKL5 Deficiency Disorder
There are people all over the world whose children are living with CDKL5 deficiency disorder. We prepared the free eBook "Understanding CDKL5 Deficiency Disorder" for our fellow CDKL5 moms and dads. It is intended to give an introduction to CDD in an easy-to-read format. In this episode, we discuss what's in the eBook - the major symptoms of CDD, some frequently asked questions that come up in our support group, and reflect on some of what we have learned as parent-caregivers to children with this complex diagnosis.
You don’t have to face this diagnosis on your own. You can find members of our CDKL5 community all over social media, in medical publications, online, and sometimes even in your own backyard. If you need help connecting, please let us know. Chances are we can help.
SHOW NOTES
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MENTIONED IN THE EPISODE:
"Understanding CDKL5 Deficiency Disorder" Free eBook
ICCRN - International CDKL5 Clinical Research Network
Participate in the International CDKL5 Disorder Database!
Listen to Rachel’s wisdom in episode 3
