Living With PC
Although every patient has a different experience, different circumstances, and different disease severity, we’ve noticed some common themes in the comments of more than 2000 patients who have contacted us since 2004 and told us about ‘living with PC.’
I AM THE ONLY ONE LIKE THIS (OR MY FAMILY ARE THE ONLY ONES LIKE THIS IN THE WORLD).
One burden of rare disease is the isolation or feeling that no one shares the condition with you. PC Project strives to build a patient community where individuals sense they are part of a world-wide ‘family’ of others living with PC. We see the impact this has on young people as they realize they are not alone.
NO DOCTOR IN MY AREA KNOWS ANYTHING ABOUT WHAT I HAVE.
Most people believe doctors know a lot about disease, but there are over 7000 rare diseases and it should not be a surprise that most physicians have no clue about PC. A doctor who admits they don’t know is actually a valuable friend and much better than one who claims to ‘know,’ having seen one article in a textbook when in medical school or having met one patient at a seminar.
Patients often think ‘if only’ I could travel to (someplace) — the doctors there would know about PC, but that is not true. Very few dermatologists have ever cared for PC patients. It should not surprise patients that no physician knows very much about this ultra-rare condition. We encourage patients to first find a caring physician in their own area (a specialist or a general practitioner). If they build a relationship of trust over time, we can provide the information and support to their local doctor so that patients anywhere in the world can have the best treatment and most up-to-date information available.
I WISH MY PARENTS (FRIENDS, SPOUSE, EMPLOYER, TEACHERS) UNDERSTOOD THE PAIN I AM IN.
Many patients talk with us about the problem of explaining their pains and report how, in their youth, they were encouraged (or even forced) to endure intense pain. One young teen, whose parents were strongly encouraging doing more active participation in PE class in order to stay fit, used the online PC pain diary. When parents saw the reports, they told us they were completely shocked to see the pain levels often experienced by this teen. PC pain can be confusing to others. We hope this website and the published articles and brochures will help patients help others better understand what PC is like.
EVERYONE TELLS ME EXACTLY WHAT TO USE TO CLEAR UP THE FUNGUS ON MY NAILS.
A PC patient must endure almost constant advice from total strangers regarding the condition of their nails. This can be the clerk at the grocery store, a mother of one of the kids at school, someone from church, or anyone else who — with no knowledge of genetic conditions — is certain they have the cure.
I WAS SEEN BY 20 OF THE LEADING DOCTORS…BUT NOTHING EVER HAPPENED AFTER THAT.
Children are often taken to this type of session by well-meaning parents. It is usually not a good experience for the child — even adults can be intimidated when being seen by a large group of folks in ‘white coats’ and then never hearing a word afterwards. In talking about these experiences, every patient indicated they were upset, angry, or disappointed by the experience.
These sessions — usually known as Grand Rounds — are a valuable teaching tool for physicians. While patients believe they are there to have someone provide answers or a treatment, they are actually there to train young doctors (residents) and provide a case study on a rare disease.
PC Project decided to change these experiences and help patients understand that they are there as the teachers. PC Project is active in promoting these educational outreach opportunities, but with specific guidelines:
- We sponsor at least 3 patients (a) so patients are not alone and can meet and socialize with other patients, have lunch or dinner, and enjoy the experience and (b) so that the full syndrome of PC can be seen and not just a single type as seen in any one patient.
- We invite adult patients and, if there is to be a child, we will always include children as well so that child has other PC patients for support.
- We advise patients that no one seeing them is likely to provide any new insight or answer about PC. With clear expectations, the patient can enjoy the role as the teacher in the session.
- We equip patients with a printed handout providing images and specific data on PC from all patients in the patient registry. These handouts have been an excellent tool in quickly educating doctors about PC and give patients something specific to share.
- We pay costs of travel, lost work, etc. and send a certificate of appreciation after the event.
- Patients who have participated in these Grand Rounds experiences have indicated they enjoyed the experience (even though it can be exhausting to be viewed by 400 doctors in a morning!)
YESTERDAY MY FEET SEEMED OKAY. TODAY I CAN’T EVEN WALK. WHAT HAPPENED?
The variability of pain in PC is puzzling even to patients. It is clear that sometimes the weather (or changes in the weather) brings on increased pain. Sometimes, it is from over-activity the day before — but sometimes, the pain is just there and there doesn’t seem to be an answer as to ‘why.’ Scientists also don’t have an answer yet to this puzzling fact.
I AM SO EXCITED! MY DOCTOR WANTS ME TO TRY _____ (OR HAS STARTED ME ON _____).
Before beginning a new drug or treatment, we encourage patients to contact PC Project to find out if others have already used the drug or treatment, what the reported outcomes were, whether the treatment has solid scientific basis in PC and what the scientific advisory group for PC would suggest. Since the IPCC is a group of scientists and physicians willing to collaborate for PC research and treatment, this group is available to comment and review proposed options to provide a second opinion.
Good ideas can come from any caring physician working one-on-one with a patient. The best situation is where the details and approach are shared and evaluated with the IPCC before the treatment begins so that the combined experience of the group can be utilized. Then, careful reporting tools are needed so that the results may lead to information that can impact the scientific and clinical knowledge of PC. Collaborative efforts based on sound science are the best pathway forward.