Margie Rose

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

I got my first Scenesse implant for EPP 15 days ago. Since then, I’ve experienced the sun on my face with no pain!! I’ve been hiking on a warm spring day in the sun!! I sat by a creek, in the sun with my feet in the water and no pain!!  I literally started bawling my eyes out right then and there.  The other hikers would’ve thought I was crazy!  Here is why!  When I was hiking last week (just 9 days after implant), it felt unreal like I wasn’t in my own body. I asked my 6-year-old. “Is this real life?” And he said “yes mama, the sun feels warm, it doesn’t burn!”  Watching him watch me in my joy has been amazing as well.

I did get a minor reaction after my first hike on day 9 after implant. That night my finger tips and hands felt hot, but it was nothing compared to what it would’ve felt like prior to the implant! I would burn instantly within two seconds in the sun. This hike was magic…I was out for maybe 2 hours in mostly sun! Also, I’m definitely still worried about pushing the limits, no sun bathing on the beach yet!  The Scenesse implant works, I fully understand it’s not a cure.  It brings me to tears.