We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.
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We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.
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
National MPS Society: Our Voices
We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.
