You are so important to those with PC; you provide the support and encouragement that every PC patient needs.
You are the means of helping PCers shape a positive self-image and gain self-confidence. You can be active in creating awareness of PC in your school, neighborhood and community. You are there to notice the little things that make a big difference for a PCer on a daily basis.
While we at PC Project care about every PC patient everywhere in the world, only you, the family and friends of individual patients, can be there moment-to-moment. We appreciate you and recognize your contributions.
We urge you to explore all sections of the website and invite you to be an active partner with PC Project as we work together to help those you love manage PC and enjoy life to the fullest. Here is a list of ways you can help raise awareness and funds.
You are the best…
We have often exclaimed ‘those with PC have the BEST marriage partners!’ or ‘those with PC have such amazing parents.’ We want to share what we have observed.
As we tried to make a list of specific examples, we realized that what we observe is that the best PC partners and friends are ‘just there.’ They do things without anyone noticing. There is a good communication ‘behind the scenes’ so that they know when and how to help. The PCer feels at ease in asking, ‘Can you please…’ without much discussion. We realized that our inability to define specifics was the answer — the best partners and friends for PCers are ‘simply there!’
The experiences of individuals and families around the world are touching and illustrate the complexities and effects of living with PC.
Understanding PC Pain
Most individuals with PC have chronic pain by the time they reach 10 or 12 years of age. However, that pain can vary even from day to day or hour to hour. One day, a child may be able to run and play; the next day, they can’t walk at all. An adult may be able to do normal tasks or work in the morning, but be unable even to stand in the afternoon. This can be very difficult for parents, friends, and teachers to understand. We have observed that most PC patients will do everything they can and will not use PC to avoid an activity (a chore, shopping, physical fitness class, work assignment, etc.). Here are suggestions of things we have seen successful helpers do:
- Make it acceptable for the individual to express their pain and their limits. It isn’t necessary to always be asking about the pain (it is there) but work out a way that the person can clearly say “I can’t” and be accepted by parents, teachers, friends. Openly talk about and script how the person with PC will let others know what they need in regard to pain or activity.
- Sometimes a person with PC will want to enjoy an activity so much they will ‘pay the price later’ and it is okay to accept their choice.
- Small accommodations can be very helpful. Sometimes the person with PC won’t ask or know to ask, but an observant and caring friend can identify simple things that matter. We have seen patients use a wheeled office chair to navigate the kitchen, knee pads for crawling at home, an adaptation to pull a wheelchair behind a bike for teenage trips to the mall, a stool and extra chair in the workplace.
SELF ESTEEM AND SOCIAL CONFIDENCE
One of the challenges of an ultra rare disorder like PC is the feeling of isolation and being different from anyone else. Family and friends can help a lot in building a solid sense of self worth. Meeting other successful individuals who also have PC is important. One of the goals of PC Project is to connect patients. The patient registry is a key place to both further research and connect and is one of the best ways to help those with PC.
One lovely young woman used to describe herself as a “mutant” and laugh. That sense of ‘who you are’ is serious. The most challenging times for those with PC seem to be from ages 6 to 14. This is when others are most cruel and children are most vulnerable. Children may not talk about the things they are experiencing. At one Patient Support Meeting, a beautiful 12-year old shared that she was made fun of at school all the time, and her parents had no idea this was happening.
By teen years, most know who real friends are and have built some type of defense to protect their self-image, but even adults can be fragile and need encouragement from friends and family. Most people with PC constantly have strangers explaining how to “clear up fungus on nails” or asking about their ‘acne’.
One man shared his experience, when, as an adult, he had to remove his shoes/socks at a scout activity and saw the shock of those around him who had been friends for years but never seen his feet. It had a lasting impact on him even as an adult.
POSSIBLE ACTIONS TO HELP CHILDREN WITH PC
Each person is different and parents find the best way to help the individual. See PC & Children for additional ideas. These are some general observations we’ve gleaned from children and adults about how their parents have helped them with PC:
- When children are young, be pro-active with school administrators, teachers, and students to tell the PC story in order to create a positive social climate. When people understand the genetic basis of PC, they can more quickly relate with the person and not only with the effects of the mutation.
- Anticipate in advance situations which may be upsetting to someone with PC if they are unprepared — this might be a swimming activity or a dance class where students remove their shoes/socks. Preparing in advance, working out alternate options, or knowing what to do in such situations can be very important.
- Be pro-active in creating positive opportunities for friends and interests. Know that there will be teasing and allow time to talk about handling these painful incidents.
- With older children and teens, help them be pro-active with school administrators, teachers, and students to tell their PC story.
- Allow your child to set what they can/cannot do on any given day/time. Accept that PC pain varies from day-to-day and season to season, Trust that your child with PC will do all they can before asking for help or quitting.
- Never limit a child, but also never encourage a child to ‘be strong’ or ‘just be tough’ and beat the PC pain. Age, weight, and size (as well as the specific gene and mutation) make a great difference in pain level. What a 7-year-old or 8-year-old with PC can do will not be the same as what a full grown 15-year-old with PC can do.
- Explore and enjoy childhood interests (ballet, basketball, cross-country, etc.) and also look for and encourage those interests that are ‘off-the-feet’ type activities (swimming, biking, chess, body building) which may become important alternatives as your child grows larger in stature.
- Emphasize planning and preparing for a career that will spare their feet. Education is important, school is important — especially for those with PC so that they have many options in the future.
- Avoid extensive efforts to ‘fix’ the problem (i.e. there is something wrong with the child). Going from doctor to doctor or being seen at ‘grand rounds’ by numerous doctors can have a long-lasting negative impact and brings no real benefit to your child. If you or your child are invited to a ‘grand rounds,’ please contact PC Project to get other PCers to join and teach the doctors what PC Project does.
- Rely on quality research articles (many available on this site) and other validated sources to understand the basics of PC and PC care.
- Respect privacy and don’t publicly post pictures or information on social media that may later embarrass.
- Rely on PC Project and privately involve the PC community when a child needs special assistance, accommodations, or help.