Opening Up About Rare Diseases
On this special edition of The Balancing Act on Rare Disease Day, we are taking a look at the lives of patients who suffer from lesser-known conditions. In fact, approximately one in 10 Americans battle a rare disease. In the U.S., a disease is considered rare if it affects fewer than 200,000 people. If you’re struggling, know you are not alone.
First up, understanding Pheochromocytoma and Paraganglioma: rare neuroendocrine tumors that can dramatically impact survival in people of all ages.
Next, we’re learning about Pompe disease, a rare neuromuscular disorder affecting the hips, thighs, and shoulders, as well as muscles in the lungs. Sarah Gonzalez, head of medical diagnostics at Sanofi Genzyme, discusses how genetic testing plays an important role in obtaining a diagnosis.
Then, The Balancing Act welcomes back Ilana Jacqueline to discuss her brave journey as she continues battling a rare disease. Not only is she living, she’s thriving–but the fight has not been easy.
