Rare Disease Special

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 share the inspiration on her soon-to-be-released book, “Surviving and Thriving with Chronic Illness”.