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Maneuvering the Medical System with a Rare Disease

Maneuvering the Medical System with a Rare Disease

FromParenting Impossible – The Special Needs Survival Podcast


Maneuvering the Medical System with a Rare Disease

FromParenting Impossible – The Special Needs Survival Podcast

ratings:
Length:
45 minutes
Released:
Jan 18, 2023
Format:
Podcast episode

Description

In this episode, Host Annette Hines welcomes Erin Prosser and her daughter, Lucy's (Lulu) neurologist, Dr. Christina Bergqvist of the Children's Hospital of Philadelphia to share their story of working together to care for Lulu and treat her neuro-developmental disease, STXBP1 encephalopathy. This is a great example of how a family member and caregiver can work successfully with a medical provider. If you're interested in the topic of rare disease, check out our older episodes like "When You're the Patient and the Parent" or "Dig Deep: Finding Hope in Special Needs Parenting with Kelly Speck." To learn more about STXBP1 and the Prosser family, check out their site here.Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Released:
Jan 18, 2023
Format:
Podcast episode

Titles in the series (100)

Parenting: Impossible – The Special Needs Survival Podcast is a podcast dedicated to giving compassionate advice for all stages of life. Our conversations revolve around the entire special needs community including those with autism, intellectual disabilities, physical disabilities, mental health issues and more. Parents and experts (and sometimes parents who are experts!) discuss a whole host of issues facing the special needs community including raising children with different abilities, transitioning into adulthood, sibling challenges and how to effectively navigate the complex systems in our world. We offer inspiration, support, expertise and a wide range of discussions that will help you survive and thrive as you support your loved one with special needs. Imagine yourself having coffee with a friend and discussing all the important challenges in your life – but your best friend is an expert! Hosted by Attorney Annette Hines, special needs mom, author of the best-selling book Butterflies and Second Chances, national expert speaker, writer and contributor to publications, and founder of the Special Needs Law Group based In Massachusetts, Annette has regular guests that include experts in the field of special needs, siblings that offer stories and survival tips with a positive message.