If you are a parent or caregiver of a child with PC, remember that you are not alone. Caring for a child with a rare condition can be challenging, and PC Project is here to support you every step of the way with information, resources, and a community that understands.
Because Pachyonychia Congenita (PC) is a rare condition, many individuals and families can feel isolated. It is not uncommon for families to visit several healthcare providers before receiving a diagnosis. In some cases, a diagnosis is not made until a family connects with PC Project and confirms the condition through genetic testing.
Many people with PC—and their families—have never met another person living with the condition outside of their own family. For families experiencing a spontaneous mutation, where there is no previous family history of PC, feelings of isolation can be even greater.
Receiving a PC diagnosis often brings many questions. Parents and caregivers may wonder what the future will look like for their child and how to best manage the condition. Because PC affects each person differently, finding the most effective care routine often takes time, patience, and experience.
Many children with PC also face challenges such as teasing or feeling different from their peers. Some may minimize their pain or avoid talking about how much PC affects their daily lives because they simply want to fit in. While many people with PC learn to persevere, doing so can sometimes come at the expense of their physical or emotional well-being.
One of the most valuable ways to support children with PC is by helping them connect with others who share similar experiences. Knowing they are not alone and learning from other individuals and families living with PC can provide comfort, encouragement, practical advice, and hope for the future.
PC Project
PC Project is here to support individuals and families in many ways. We can provide brochures and educational materials to share with healthcare professionals, schools, employers, and others to help increase understanding of PC. Our team is also available to answer questions about the condition and connect families with others who have similar experiences.
If an answer is not immediately available, PC Project can often reach out to members of the PC community to gather practical advice and shared experiences. We can also assist with letters of support for disability parking permits, benefits, and other services when appropriate.
For school-aged children, PC Project can provide letters to help educate teachers and school administrators or support requests for reasonable accommodations, such as flexibility with physical education, footwear or sock requirements, and other adjustments that help students participate comfortably and safely.
Above all, PC Project is a welcoming community. Families are encouraged to reach out with questions, seek support, and connect with others who understand the unique challenges of living with PC.
PC Project has also created a helpful list of ways that friends and family members can provide meaningful support to someone living with PC.
Connect with us if you have any questions or need support.
Tips and Tools
Tips and Tools, also known as the PC Wiki, is a collection of practical information and shared experiences gathered from the PC community. The content has been carefully compiled from patient webinars, emails, social media discussions, patient support meetings, and insights from healthcare professionals.
Our goal is to provide a trusted place where individuals and families affected by PC can learn from one another, discover practical tips for managing symptoms, and share strategies that have been helpful in their own experiences.
Below is a video featuring Claudia, the mother of a child with a spontaneous PC mutation, as she shares the strategies and approaches that have helped her family manage PC.
Facebook Group
The Pachyonychia Congenita Facebook group is a closed private chat group. Only those who are part of the International PC Research Registry (completed questionnaire, consent form and sent photos) can join, so if you or your child haven’t done this please do so! Joining the registry is the most important thing a patient can do to access the right care for their child with PC.
Parents who don’t have PC can join the Facebook Chat group on behalf of their children in the registry. The Facebook chat group is a valuable and supportive group where members can ask each other for advice on anything from living with PC to managing PC. It’s also a great place to share fundraising ideas and positive PC stories. All posts are confidential and can only be seen by members of the group. This means you can post questions and photos or pictures that you may not feel comfortable sharing with people who don’t have PC.
Please do not use the Facebook group as a place for medical information, but to share and support one another. You can send any medical inquires to info@pachyonychia.org or discuss with your local doctor.
Connection Circles
PC Project regularly hosts virtual meetings for children, teens, families, and individuals with specific PC gene types. If there is interest in a particular topic or group, contact PC Project and we will help organize a meeting and invite others to participate.
These online gatherings provide a comfortable way to connect with others living with PC from home. Participants can talk, chat, and share video using a computer or mobile device to learn from one another, ask questions, and build friendships. Meetings may focus on specific topics or simply provide an opportunity to connect and enjoy time together with the PC community.
Patient Support Meetings
Our Patient Support Meetings are a great opportunity to meet other kids with PC or other parents of children with PC. patients, caregivers and children. Meetings are held every year, alternating between the United States and Europe. For details of our past meetings, or visit the video and presentation library. For many this will be the first time they have met another child or family with PC- often an event which is life changing. Here are some comments from PC patients who have attended PSMs in the past:
“At the Patient Support Meeting, for the first time I looked into the eyes of another person with the same disease, saw them move like me, saw them use the same tricks that I use to get through their day. This gave me an immense feeling of no longer being alone and it’s a wonderful feeling. I would say that I’ve never been as happy and confident before the PC Patient Support Meeting experience.”
“Everyone is so friendly and welcoming and it’s a once in a lifetime opportunity to meet people with the same struggles and to learn more about the condition.”
“Meeting other people like me was so awesome. Felt like they were long lost family. It was so interesting finding out about the research that is being done.”
“This was one of the best experiences of my life to finally meet someone with the disease I have. It wouldn’t be the same over web.”
“PC is a family first and foremost. The PC organization has done so much for me and my family and changed my life in a way that I cannot put into words. I am so very grateful and definitely wouldn’t be the person I am today haven’t I met you all.”
“You will also learn a lot about how to care for PC and finding others that you can talk to that probably can understand more about how you feel about PC.”
“The meeting was very friendly and welcoming. There was no pressure to be more involved that I felt comfortable with, it was uplifting to meet people with similar experiences to mine.”
“It’s amazing to be able to talk to other patients with PC and instantly makes you feel understood and much less isolated.”
“That it will help you to understand the disease but also to share common experiences and feelings with people who can understand you too.”
“It is a worthwhile experience and really fulfils its name – Support.”
What you need to know: Scholarships are available to help financially support families attending Patient Support Meetings. Our goal is that scholarship funds will pay meeting fees for every patient to attend their first PC meeting. In addition, PC Project Scholarships provide funds for patients and family members who need assistance for travel, hotel, and/or meeting costs.
