Rare Disease Day 2019
Today is rare disease day. Did you know that one in 10 people will suffer with a rare disease at some point in their lives? 50% of those people are children. (Nearly 30% of those children will not make it to their fifth birthday. :( ) These Children are often referred to as "zebra kids" because physicians are taught "if you hear hoofbeats, think horses, not zebras." So that physicians don't go around over diagnosing a rare disease. Unfortunately, this often leads to misdiagnosis or no diagnosis at all. The average amount of time it takes to make a proper diagnosis is 8 years! Before I had Silas, I hadn't really ever heard of Epidermylosis Bullosa (EB) before. I had maybe seen a commercial or clip for a documentary on butterfly children once or twice, but I really had no idea what it was, and never in a million years would I have guessed that one of my children would be born with this condition. Upon Silas' birth, I was terrified of the unknown. I felt...