Скачать с ютуб Sharing stories of living with pyruvate kinase (PK) deficiency в хорошем качестве

Sharing stories of living with pyruvate kinase (PK) deficiency

0:00 Sharing stories of living with pyruvate kinase (PK) deficiency 1:33 Caregivers gain support from the PK deficiency community 2:50 Each generation shared their different experiences growing up with PK deficiency 5:18 Reflections on female and male experiences of PK deficiency 6:54 Beneath the surface and beyond the numbers 9:46 Being heard: advice for being your own best advocate 12:02 The power of sharing and the strength of community We brought together a group of people who are living with PK deficiency or have a loved one with this rare disease. After having one-on-one conversations, they came back together as a group to talk about what they learned—and share their perspectives on the differences and similarities in their experiences. The group also discussed communication with health care providers, the importance of advocating for themselves, and the power of sharing their stories with other people. To learn more about PK deficiency, please visit: www.knowpkdeficiency.com The patients and caregivers featured in this video are discussing their personal experiences with PK deficiency. This video is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your health care professional before making any treatment decisions. ©2023 Agios Licensed music: HPFPR5MV50KJKR3Z, BPNUCDL0PFNAQY6N, VMS2I3I1KYRVPIP9