We’d Love to Hear Your Story
So many of you inspire us every day, and yet we know how hard it can be to “share your story,” especially when you don’t know where to begin.
Living with pachyonychia congenita (PC) or another palmoplantar keratoderma (PPK) is complex. It’s daily life, pain, resilience, family, hope, frustration, and strength, often all at once. And while we regularly ask our community to share their experiences, we realize that a blank page can feel overwhelming.
We want to do better.
If you’re open to it, we invite you to share any part of your story — a few sentences, a paragraph, or more. There’s no right length, no right tone, and no pressure to answer everything. Share what feels true and meaningful to you.
If it helps, here are a few prompts to get you started. You can respond to one, several, or none at all:
- What is it like to live with PC or another PPK?
(Daily life, pain, mobility, or anything you want others to understand.) - What is one challenge of PC/PPK that most people don’t see or understand?
- What has helped you most in managing life with PC/PPK — medical care, tools, support, or community?
- How has PC Project, the Registry, or the PC Project community helped you or your family?
- What do you hope for when you think about the future of PC research or treatments?
- Is there anything else you’d like to share about living with PC/PPK?
Your story matters — not only to us, but to other individuals and families who may feel alone in their journey. The stories you share may also help shape future PC Project communications and campaigns, including Giving Tuesday, year-end appeals, Rare Disease Day, and other awareness efforts. We will always treat your words with care and respect.
If you’re willing to share, please share your story here. And if now isn’t the right time, that’s okay too. We’re grateful you’re part of this community.
Thank you for being you and for helping us better understand, support, and advocate for everyone affected by PC and PPKs.
