7. For Parents and caregivers of children with PC

We want all caregivers and parents of children with PC to know they are not alone!

Because Pachyonychia Congenita is an ultra-rare disease, those who have it can feel isolated. 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.  Children are often teased, and it is hard to know how best to care for PC.  Also, PC patients often downplay the extent of pain and the restrictions that PC puts on their lives and many people with PC ‘just get on with it’. Yet, by helping PC children learn that others have the same problems and challenges and that they are not alone, we can help bring them comfort and hope.

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 (link to connect with us page) 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 children with PC.  https://www.pachyonychia.org/for-family-friends/

PC Wiki

Our PC Wiki is a Wikipedia style 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.  Specific headings include care techniques, conditions of PC and patient tips and comments.  We are constantly updating the Wiki so please keep checking back for more up to date information.   https://www.pachyonychia.org/wiki/wiki-home/

FB chat group

This is a private chat group on Facebook.  Only those who are part of the International PC Research Registry (IPCRR) (completed questionnaire, consent form and sent photos) can join, so if you or your child haven’t done this please do so! https://www.pachyonychia.org/patient-registry/

This is the most important thing a patient can do. Genetic testing (free of charge) is offered to all those who join the IPCRR (https://www.pachyonychia.org/patient-registry/). Parents who don’t have PC can join the group on behalf of their children in the IPCRR.

The FB 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. https://www.facebook.com/groups/pachyonychia/  Please do not use this group as a place for medical information, but to share and support each other. You can send any medical inquires to info@pachyonychia.org..  You will need to request approval to join and one of the administrators will get in touch with you.

PC Kids Club Webmeetings

We have held webmeetings 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 (PSM)

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, https://www.pachyonychia.org/patient-support-meetings/ or visit the videos and presentations page at https://www.pachyonychia.org/videos-and-presentations/. 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 (PSM), 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 PSM 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.

PC Kids Corner:

  1. What is PC?
  2. Explaining your PC
  3. Bullying
  4. Managing your PC at home
  5. Managing your PC with a professional
  6. Living with PC
  7. For Parents and caregivers of children with PC
  8. Supporting PC Project and the PC Community
  9. PC kids and teens- The brilliant things kids with PC are achieving!

Details

Category: PC Kids Corner