On the 6th day of #RareChristmas Phoebe wants you to know...with rare disease "when you hear hoof beats, you think zebras!" Doctors are taught in medical school "when you hear hoof beats, think horses." They are trained to look at your symptoms and try to make them fit into these perfect little boxes of diseases they know about, diseases they can treat, symptoms they can make go away. But this is not the case with rare disease. Not every disease fits into these little known boxes. Not every symptoms can be made to disappear by taking a certain medication or following a certain regimen. Not every disease can be cured by going to a doctor. On almost every one of Phoebe's trips to the hospital, at least one doctor tries to push on us that they have "figured it out, have the magic cure, know how to fix her". They look at the symptoms she is experiencing and think horses, because that is what they are trained to do. It is every once in a while, like we experienced today, you come across a doctor who doesn't try to fit her into that box. Who hears the history and symptoms and knows she is a zebra. And the doctors who are aware that there are zebras out there, make all the difference in the care Phoebe and the other rare warriors receive. #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.