Behind the Mystery: X-Linked Hypophosphatemia
February 28, 2017
Learning and Thriving with a Rare Disease.
During The Balancing Act’s Rare Disease special, we explore two rare diseases: X-linked hypophosphatemia and neuroendocrine tumors, as well as catch up with one special patient who inspired our Behind the Mystery segments. X-linked hypophosphatemia is an inherited bone disorder causing bow-legs, pigeon-toes and excessive cavities due to low phosphorus levels. We hear how it effects the lives of two brothers living with this rare disease and the hope they have for the future. We also hear an inspiring women who didn’t stop to find the correct diagnoses for her Neuroendocrine tumors as she shares hopeful words for anyone living with a rare disease. Finally, we revisit with Ilana Jacqueline, Managing Editor of the The RARE Daily at Global Genes, she gives us a health update as well as shares the inspiration on her soon-to-be-released book, “Surviving and Thriving with Chronic Illness.”
The National Organization for Rare Disorders (NORD®) is celebrating Rare Disease Day 2021 with The Balancing Act.
Travis Flores is a 29-year-old cystic fibrosis survivor and a recipient of a very rare third double-lung transplant in May 2020.
The Balancing Act has partnered with the National Organization for Rare Disorders (NORD) and WEGO Health to shine a light on rare diseases and the impact they have on patients.