Back to the Future

Since I joined the BPES Facebook page, I have enjoyed reading everyone’s posts.   I saw one the other day that really caught my attention.   It was from a mom who posted a picture of her daughter who has BPES.  The caption mentioned that her daughter is about to turn 10.  She went on to say that her daughter had an upcoming doctor’s appointment where she would get tested to find out if she has Type I or Type II.   And if they find out she has Type I, they planned to get a consult for IVF and having her eggs frozen.

When I read this, my first thought was, would that have been me if we knew what I had?  When my brothers and sister and I were born, we were told we just had ptosis.  We had no idea until recently that the ptosis was only part of it.

But this post made me realize, if we had known, would I have gotten tested and have had to start thinking about freezing my eggs at 10 years old?!  I’m pretty sure I was still playing with Barbies at that age.

In some ways, I am glad that I didn’t know, and was blissfully ignorant.  I had enough to worry about in junior high and high school, and can’t even imagine if right after I started getting my period, I would have had to make a decision about freezing my eggs.

I am happy and have no regrets in my life, but I can’t help but be curious at how differently my life would have been if I had known about my BPES from birth.  Until I started reading other people’s stories, it didn’t even occur to me how differently my childhood could have gone.  Reading this post made me grateful that not knowing probably eliminated a lot of stress from my life.


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