Listen "Episode 24: Teresa’s Life with Louise (age 26)"
Episode Synopsis
Episode 24: Teresa’s Life with Louise (age 26)Each person who lives with CDKL5 deficiency disorder is unique, and Louise is the epitome of living a unique life with CDKL5. Her CDKL5 mutation is in her introns, and her main seizures are the absence type, which initially were frequently missed. She has many skills that we don’t typically see in our community - she can talk, she can walk, jump, and dance! Hear from Louise’s mom, Teresa, about the extraordinary life Louise leads as an adult in her community and the support in place that allows her to have independence. Teresa also shares honestly about the impact raising Louise has had on their family, her health, and tips for how she coped.Thanks for joining us, Teresa!SHOW NOTESCheck out our website and sign up for our quarterly newsletter at www.CDKL5inColor.comFollow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!Email us to be on the show! [email protected] IN THE EPISODE:Absence SeizuresTonic Clonic SeizuresWhat are Introns and Exons?CDKL5 Parent Support Group on FacebookWhat it’s like to be a “glass child” articleIFCR Transition to Adulthood GuideThe CARE Binder - a resource for families who are Caring for Adults with a Rare EpilepsyRESOURCES:VIP Sibling Kit for rare epilepsy siblingsCleveland Clinic - Always Coping, Rarely Seen: Explaining Glass Child Syndrome
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