Your lived experience is powerful. Data matters, but stories show what EPP takes from people and what meaningful change can look like. By sharing your experience, you can help others understand the daily burden of EPP and why access to bitopertin now matters.
You do not need to write something perfect. Honest, specific details are often the most powerful.
Creating your story: What to focus on
The most compelling stories are often specific and personal. Share what was hard, what changed, and why that change matters.
Before bitopertin
Tell us what life was like before bitopertin.
You might include:
How much time could you spend in the sun before feeling symptoms?
What did a reaction feel like?
What did EPP stop you from doing, especially everyday things others might not think twice about?
Is there a moment that captures what life with EPP was like?
After bitopertin
If you have received bitopertin, tell us what has changed.
You might include:
How much time can you spend in the sun now?
How has your life changed?
Have your limitations been reduced? How?
Is there an everyday experience that might sound small to others but feels extraordinary to you?
Submit your story and photos below, and we will add them to Patients for Bitopertin right away.
Increase the impact of your story
Share on your social media.
Check out Post to Your Socials for sample posts, suggested hashtags and more!
Sample Stories
