We’ve heard time and time again from our community that people say, “you don’t look sick.” We are committed to sharing Jeffrey’s story with the world to encourage earliest possible diagnosis, and ultimately, cures for PI. One of the best ways to Do Something is to share your own journey with PI!
There are still so many people around the world who have never heard of PI and don’t know what it’s like to live with or care for someone living with a rare disease. Sharing your experience with PI with friends and family, and even others outside of your community, is a great way to spread awareness, educate, and encourage a better understanding about what you’re living through. Open and honest discussions can make a profound difference and help to expand our global community!
You might find it helpful or inspiring to connect with other patients on social media, or even find a support group to share experiences—this may be especially beneficial for caregivers. Bringing these conversations outside of your immediate community circle is a great way to provide clarity and spread hope to others while also supporting each other along the way.
Sharing your story may empower others to find answers, ask questions, and even result in possible diagnosis for some. We can do so much more when our community stands together, united on the path towards finding better treatments and cures for PI!