PC varies greatly in how and when it begins to affect children. The age at which symptoms appear and their severity can depend on the specific genetic mutation as well as the individual child.
How PC changes over time is different for every individual. Questions such as Will PC get worse with age? or When will symptoms become more noticeable? do not have the same answer for everyone. The age at which symptoms appear and how much they affect daily life can vary depending on the individual and the specific genetic mutation.
For example, one family shared that their son with PC-K16 experienced blisters at a young age, but his symptoms did not begin to significantly affect his daily life until he was about 6 or 7 years old. By age 11, his PC had become much more impactful. Every person’s experience with PC is unique, and symptoms may change over time.
Will PC limit my future?
PC may affect participation in some recreational activities and influence future career choices, but it does not have to limit what is possible. With planning and the right accommodations, many activities can still be enjoyed. For example, some amusement parks offer accessibility services for guests who have difficulty walking or standing for long periods. Others with PC choose to use a wheelchair or other mobility aid to make the experience more comfortable. Over time, individuals with PC often become skilled at recognizing their limits and planning activities accordingly.
When thinking about future careers, it can be helpful to learn about different professions, talk with people working in those fields, and explore careers that match individual interests and abilities. Many workplaces can also provide reasonable accommodations to support employees with PC. Working hard in school, developing valuable skills, and preparing for careers that involve less standing or walking can help create many opportunities for a successful and fulfilling future.
What to do during School Trips?
If possible, discuss PC with the school and teachers before the school year begins. Before a field trip or special activity, learn the details in advance and work with the school to arrange any accommodations needed to help the child participate safely and comfortably without worsening symptoms.
What about college/university?
Students with PC can pursue any college or university they choose. Being open with the school about PC and meeting with disability services, counselors, or instructors before classes begin can help ensure appropriate accommodations are in place.
Because college campuses are often large, options such as biking or other mobility aids may make traveling between classes easier. Some colleges and universities may require supporting documentation to approve accommodations. In these situations, a genetic testing report or a letter from PC Project may be helpful. PC Project can provide letters of support and other resources to assist students in obtaining accommodations that help them succeed in school and, later, in the workplace.
