Share your story

Written By Anna Mann

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

Featured
For the first time in my life, I can relax.
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
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
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.
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!
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
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
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
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
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.

Anna Mann
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