We are two sisters, recently officially diagnosed with BPES. For most of our lives, we thought we just had the “P” (P= ptosis= droopy eyelids) part of BPES. Our dad has it as well, and so it was inherited. Our parents always told us that we were made that way and it was special. They never had us or our brothers go through with any surgeries. It wasn’t until fairly recently that we found out that the ptosis was only part of it.
We’ve seen a lot of blogs written by moms whose sons or daughters have BPES and they talk about surgeries. But we have not found a lot of first-person female stories. The older we get, the more we appreciate our unique look. We decided to start this blog to share our experiences as women in their 30s with BPES Type I who did not have any surgeries as children.