On the 7th day of #RareChristmas Phoebe wants you to know...just because you have never heard of a disease, does not mean it does not exist. We have faced, multiple times, doctors from our insurance company tell Phoebe's specialists "I have never heard of that, therefore it does not exist." This mindset has resulted in denial of coverage for testing Phoebe has needed. There are diseases that have names today that less than a decade ago were only known by a group of symptoms and a research code. There is more information about some diseases today than there was fifty years ago. Not every doctor is going to know about rare disease or even have heard of some the names of rare diseases. But to tell a family something does not exist simply because you have never heard of it, goes against the oath you took as a doctor. These diseases do exist. And these patients, who are fighting battles you could not even begin to imagine, deserve to have the same access to care, treatment and testing as those who suffer from diseases you have heard of. #12DaysofRareChristmas
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.