Our Experiences
With EPP & XLP, sun avoidance dominates life. Bitopertin can set us free
Here are our stories.
For the first time in my life, I can relax.
I spent an enormous amount of my childhood by myself, mostly recovering from burns in our cool basement.
This life-changing drug answered a prayer
Growing up, I have vivid memories of my parents taking our family to the lake or the pool on sunny, summer days and within 10-15 minutes, it resulted in me screaming and crying in pain.
For the first 50 years of my life, the sun was my enemy
It’s 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.
It gave me my life back.
EPP didn’t just limit me, it controlled me. Everyday things that most people don’t even think twice about, like walking from your car into a store, going to class, or hanging out with friends outside, were major challenges.
The impact reaches far beyond just the individual
Over the past few years, Shawn has been open about the health challenges he has faced. Despite those challenges, he continues to approach life with resilience and gratitude.
What a gift to give a child- to have fun in the sun!
London would have painful reactions, swelling to her face, hands and feet, broken blood vessels and discolouration to these areas. She would have extreme sensitivity to touch, temperature and often felt like she was on fire. She would go several nights in a row without sleep.
I now enjoy being an outdoor grandma without worry of pain
Upon leaving the darkness of my house, it is necessary to wear a hat, bandanna, leather gloves, denim jacket, jeans, socks, and shoes. This includes the summertime. This is to prevent the searing, flame burning sensation on my hands, face, and feet.
Make sure every EPP child has a chance to be a kid
For our son, summer means sitting on the sidelines, It means learning to self-exclude to avoid pain.
I’m now loving every minute of my life
When I was 13 months old I would start screaming uncontrollably every time she took me to the beach. My mother couldn’t hold or bathe me and it broke her heart.
From 15 mins to 8 hours without pain
What people don’t always see is how much EPP takes from you beyond the physical pain. It takes your independence. It takes your freedom. It takes your ability to just exist without thinking.
Bitopertin has changed my whole life!
I have spent the majority of my life indoors because just 7-10 minutes of sunlight causes extreme pain.
Make this a reality.
Everyone that suffers with EPP and their families know the pain and isolation that EPP causes in children
