If you are a parent or caregiver of a child with PC, you are doing great and we are here to help!
Because Pachyonychia Congenita is a rare disease, those who have it can feel isolated and so can their family members. Sometimes it takes going to several doctors to find a clinical diagnosis and sometimes an answer isn’t found until the family finds PC Project online and gets a diagnosis through genetic testing.
Most people with PC or their families have never met or spoken to another affected individual outside of family members. When a parent has a child with a spontaneous mutation (the first case in a family), both the child and the parent can feel even more alone.
Once a child has a diagnosis of PC, a parent may wonder what this will mean for their child and even feel nervous about their child’s future. A parent may not know how to best care or manage their child’s PC, especially when what works for one person doesn’t necessarily work for another.
Children are often teased and just want to be normal. Because of that, PC patients often downplay the extent of pain and the restrictions that PC puts on their lives. Many people with PC ‘just get on with it’ but they certainly pay the price for it later.
Still, by helping PC children learn that others in the world have the same problems and challenges and how to cope with them, we can help bring comfort and hope to PC Kids.
PC Project
PC Project can help in many ways from providing leaflets and brochures for you to give out to Medical Professionals or to schools, to answering any questions you have about PC, to putting you in touch with other families who are in similar situations. For example, if we don’t know the answer to any questions right away, we can email questions to other PC families and caregivers who more than likely will be able to provide advice. PC project can also help you apply for services you may need such as helping with letters for disability parking permits, or benefits. PC Project can also write letters to schools to help educate teachers or administrators, or to request special adaptations (such as not wearing nylon socks or allowing the child to decide when to participate in PE and when to sit down). You are part of a welcoming PC family, so please connect with us if you have any questions or need support.
PC Project has also put together a helpful list of possible actions which friends and family may take to help.
Tips and Tools
Tips and Tools, also known as our PC Wiki, is a page full of information which has been carefully gathered from many sources including patient web meetings, patient emails, Facebook postings, patient support meeting discussions, and physician notes. Our goal is to provide a central place where PC patients can find tips and information from other patients and where patients can share what works best for them and what they have experienced.
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.
Web meetings
We have held web meetings for PC Kids, teens or by specific genes. If you are interested in a webmeeting, contact PC Project and we will arrange a meeting and invite others to join. This gives you an opportunity to meet others from the comfort of your home. You can talk, chat and share your video screen on a computer or phone in order to interact with others who have PC. We can do meetings for specific topics or just for the fun of it.
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.
