For the first 50 years of my life, the sun was my enemy

The little girl in the first photo is me, fishing at our family’s favorite lake in Wyoming. I’m wearing my dad’s hat to block the sun from my face with rags wrapped around my hands so I could hold the fishing pole without the sun burning me.

In the second photo I’m standing next to my sister — she’s in her swimsuit, excited to jump in the water. I’m in a long-sleeve shirt, hand shielding my face from the sun, probably knowing I couldn’t join her.

Between those two childhood pictures and the third one — me turning 50 and finally enjoying in the sun — is a lifetime of crossing the street to walk in the shade, skipping sunny family outings, and after every accidental over-exposure, lying in the darkest, coldest room I could find while my body felt like it was on fire.

I have Erythropoietic Protoporphyria (EPP).

For most of my life, too much sun has caused me excruciating pain — and silently, it’s been stiffening my liver.

But something exciting has changed.

I’m now in Phase 3 of the Bitopertin clinical trial, and for the first time in my life I can feel the warmth of the sun on my skin without fear.  No more hiding.

“I still can’t believe it!”

If you or someone you love lives with EPP, please know there is real hope on the horizon. Bitopertin has given us a bright, sunny future, and I pray it is approved for every kid suffering with EPP who is standing on the shore under a tree watching everyone else swim in the sun.

-Tammy Forbes