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Grief, Legacy, and Hope with Dr. Klane White
Manage episode 372178738 series 3320145
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Show Introduction:
- The host introduces the National MPS Society's Our Voices Podcast for the second season, focusing on unmet needs and areas requiring more MPS and ML community support.
- Emphasizes the lack of knowledgeable physicians in rare disorders like MPS and ML, leading to dismissive attitudes and missed treatment opportunities.
- Interview Introduction:
- The host, Jason Madison, introduces Dr. Klane White, a pediatric orthopedic surgeon specializing in skeletal dysplasia, metabolic bone disease, spinal deformity, and genetics.
- Dr. White is an MPS parent who has navigated the challenges of caring for a child with a rare, life-threatening disease.
Interview Topics:
- Navigating Life and Career with a Child with a Rare Disorder:
- Dr. White's personal experience and challenges as a parent and surgeon.
- Balancing care for the child's specialized needs and managing personal and professional life.
- Supporting Non-Affected Siblings:
- Addressing the concerns of overshadowing and ensuring a sense of individuality and involvement for non-affected siblings.
- Utilizing support from friends, family, and the community to help provide attention and engagement for non-affected siblings.
- Dealing with Grief and Honoring the Legacy:
- Coping with the loss of a child with a rare disorder and the grief process.
- Keeping memories alive and celebrating the child's life through rituals, commemorations, and ongoing remembrance.
- Establishing a foundation or initiative to give back in the child's name, supporting other children with chronic, life-threatening diseases.
- Conclusion:
- Expressing gratitude for the support received from the MPS community and emphasizing the importance of reaching out for help.
- Highlighting the power of connections formed with other families and professionals during the journey.
- Encouraging listeners to cherish and remember the lives of their loved ones and find meaningful ways to honor their legacies
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