Friedreich’s Ataxia News hosted a live webinar on Nov. 6, 2024, for patients and caregivers affected by Friedreich’s ataxia (FA). Panelists included Kiersten Riggs and Kyle Bryant, both of whom are living with FA, as well as caregivers Norman Simpson and Victoria Carbone. Along with host Sean Baumstark, they discussed a variety of topics including communication among patients, caregivers, and medical providers; challenges regarding treatment compliance, transitioning from pediatric to adult care, and mental and emotional health; and caregivers advocating for patients and patients advocating for themselves. Check out the highlights from the webinar below.
In the first segment, Sean and the panelists discuss navigating communication challenges in FA care, sharing experiences of autonomy, family dynamics, and interactions with healthcare providers.
Sean and the panelists explore challenges in managing FA, discussing strategies for balancing independence, caregiver support, and maintaining routines for resilience and hope.
The panelists discuss advocacy and support for individuals with FA and their caregivers, highlighting issues like ableism in medical settings, self-advocacy, and ways to ensure their voices are heard.
Sean and the panelists discuss finding their voices with FA, balancing caregiving roles, and navigating self-advocacy, offering insights and advice for empowering individuals and fostering independence.
Key takeaways from the webinar include the complexity of the relationship between FA patients and caregivers, and the importance of practicing open communication and empathy and asking for help when necessary.
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