Bitopertin has changed my whole life!
“At 54 years old, I have spent the majority of my life indoors because just 7-10 minutes of sunlight causes extreme pain.”
Normal day out attire prior to Bitopertin
My name is Ginger Gonsalves and I have Erythropoietic Protoporphyria (EPP). I was diagnosed at the age of two and at fifty four years old I have spent the majority of my life indoors because just 7-10 minutes of sunlight causes extreme pain. It feels like I am being burnt alive from the inside out and that pain can last days. The only way of dealing with the pain is to stay in a cold, dark room and endure it, until the reaction stops.
In July of 2023 my whole world changed when I joined a phase two drug trial for Disc Medicine’s Bitopertin.
I knew within three days I had the real drug. By day nine I made it outside in the sun almost 9 hours, it was a 95 degree day and the sun index was above 8. I couldn’t believe it.
Fast forward two and a half years later and I have the freedom to do what ever I want, whenever I want without the worry of the pain from the sun. I can spend all day outside with my kids, I can walk the dogs, go grocery shopping and drive my car without the threat of a reaction.
“Fast forward two and a half years later and I have the freedom to do what ever I want, whenever I want without the worry of the pain from the sun.”
Bitopertin has changed my whole life. I have been able to go to beach many times and on vacation with my family. I am so grateful that I ended up in this drug trial. The FDA needs to approve Bitopertin because this drug is going to be a game changer for our EPP/XLP community.
