Claudia Avella, from Spain is a mom of a PCer and an active member of our international PC community. Not only did she translate one of our brochures into Spanish, she also spread awareness about PC by writing the following article for her work newsletter:
“I would like to tell you about a non-profit organization which I am deeply grateful for. I came to know PC Project in 2015, after my baby was diagnosed as a spontaneous Pachyonychia Congenita (PC) case.
PC is a genetic, chronically debilitating disorder, characterized by disabling pain which limits walking, with thickened nails and thickened skin on the soles of the feet and palms.
Dealing with ultra-rare conditions such as PC can be terribly lonely. On top of the actual disease, patients and families face a lack of medical knowledge which makes the task of even finding a doctor to lead the diagnostic process or treatment even more difficult. Additionally, most people have never seen another person with PC (unless they are related), which adds to the feeling of solitude.
PC Project really came through for us, and I believe for PC patients and their families everywhere. They:
- Offer free genetic testing
- Manage the International PC Research Registry (WIRB-approved)
- Organize Patient Support Meetings: Educational gatherings where patients can meet, teach and support one another; alongside physicians, scientists and pharmaceutical representatives.
- Encourage Research and Industry partnerships, as well awarding grants to fund PC-related projects.
And they do it with such a special, human touch, that they are able to help us stay hopeful even when life gets rough.
My profound thanks to them.
For more information, please see: https://www.pachyonychia.org/ “
Thank you, Claudia for teaching others about PC and PC Project!
