Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist
227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
- Autor: Vários
- Narrador: Vários
- Editor: Podcast
- Duración: 0:37:41
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Sinopsis
"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases. Key Insights: The significance of early genetic testing in providing crucial information and guiding treatment decisions. The importance of building a support network to navigate the medical and educational challenges. Staying organized and persistent in the face of numerous medical consulta