Even though Phoebe is still undiagnosed, we have still faced “I have never heard of that” from the medical community. With each test/procedure/surgery/ER visit/hospital admission we go through the lengthy list of her five year medical history and say the names of some of the diseases they are considering as diagnoses and we are met with confused faces and the question of “what is that?”. How can the rest of the world know about these diseases if the medical community doesn’t know about them? How can the patients get the treatment and care they need if the majority of the doctors and facilities they go to have never heard of them?
This is why the rare voice is needed. We need to share our stories...the triumphs, the tragedies, the hope, and the fears. Phoebe’s voice is a roar. Her roar is not for pity, sympathy or attention. Her roar is to educate about the existence of rare diseases. Her roar is to advocate for medications and treatments for rare patients. Her roar is to fight against insurance companies denials of testing. Her roar is to let other rare patients know they are not alone. Her roar is to give a needed voice to rare and undiagnosed patients. Her roar is to encourage you to roar too...to Roar with Phoebe.