Newly Diagnosed with Angelman Syndrome
This session is about supporting families with a newly diagnosed child with Angelman Syndrome. The speakers, Elizabeth Jalazo and Kathryn Ely, share their personal experiences and offer advice to parents. They emphasize the importance of treating the child as typical and having high expectations. They also discuss the benefits of implementing a low glycemic index diet and the impact it has on sleep, cognition, and seizure control. The speakers encourage parents to take care of themselves and seek support from others. They highlight the significance of finding a community and attending clinics for specialized care. The session concludes with a reminder to have hope for the future, as gene modifying therapies are being developed to improve the lives of individuals with Angelman Syndrome.
Welcome to the 2021 ASF Virtual Family Conference! In this session, titled “Newly Diagnosed 101,” we have two experienced parents and advocates for Angelman Syndrome (AS) families, Dr. Elizabeth Jalazo and Kathryn Ely, who will be sharing their insights and answering your questions.
Amanda Moore, the CEO of the Angelman Syndrome Foundation (ASF), welcomes everyone to the session and introduces Dr. Elizabeth Jalazo and Kathryn Ely as knowledgeable and involved members of the Angelman community. She encourages participants to ask questions and engage in the discussion.
Meet the Speakers
Dr. Elizabeth Jalazo, a pediatrician and Clinic Director for the Angelman Syndrome Foundation, shares her personal experience as a parent of a child with Angelman Syndrome. Her daughter, Evelyn, was diagnosed in 2015, and Dr. Jalazo joined the Foundation in 2017. She emphasizes the importance of finding a supportive community and seeking expert medical care.
Kathryn Ely, the Family Resources Advocate for ASF, introduces herself as a former teacher and the mother of an eight-year-old son, Stetson, who was diagnosed with Angelman Syndrome at 17 months. She highlights the significance of finding a community and shares her journey of accepting the diagnosis and embracing the challenges.
Early Days of Diagnosis
Dr. Jalazo and Kathryn Ely discuss their experiences during the early days of their children’s diagnoses. They talk about the initial fears, the emotional process of grieving the child they thought they would have, and the importance of finding a supportive community. They emphasize the need to go through the emotions and seek support when necessary.
The Impact of Diet
Both speakers highlight the positive impact of implementing a low glycemic index diet (LGIT) for their children with Angelman Syndrome. They share their personal experiences and the benefits they have observed, such as improved sleep, cognition, and seizure control. They emphasize the importance of working with a nutritionist and following medical guidance when implementing dietary changes.
Self-Care and Support
Dr. Jalazo and Kathryn Ely stress the significance of self-care for parents of children with Angelman Syndrome. They encourage parents to take care of themselves, find support from others, and seek help when needed. They also discuss the importance of setting boundaries, treating their children as typically developing individuals, and finding time for their relationships.
Looking Towards the Future
Dr. Jalazo highlights the promising advancements in gene modifying therapies for Angelman Syndrome and the potential for transformative therapeutics in the near future. She encourages parents to have hope and emphasizes the importance of being informed and involved in the research and clinical trials.
Q&A and Closing Remarks
The session concludes with a Q&A session, where participants have the opportunity to ask questions and receive answers from Dr. Jalazo and Kathryn Ely. The speakers reiterate their availability for further support and encourage participants to reach out with any questions or concerns.
- Title: Newly Diagnosed with Angelman Syndrome
- Author(s): Elizabeth Jalazo, Kathryn Ely
- Author(s)’ affiliation: UNC; ASF
- Publication date: 2021-08-12
- Collection: 2021 ASF Virtual Family Conference