PC experts are made through collaboration, communication and trial and error.
We are frequently asked by patients or their caregivers for referrals to a doctor in their area who knows and understands PC. Unfortunately, because PC is rare, many physicians, including dermatologists and podiatrists, do not know about PC and many have never before seen a PC patient in their practice.
We advise patients or their caregivers to establish a good relationship with a kind, caring, willing-to-listen and willing-to-learn doctor. In our experience, there are many excellent professionals who fit this description. It just may take some time to find that doctor who is a good fit for you and your PC.
At this time, most PC patients provide home care for their condition — involving frequent trimming of callus and nails, and sometimes draining of cysts. Alongside this, a relationship of trust with a physician who cares will make all the difference in the well-being of a PC patient. Sometimes a patient will need extra help with infections or pain that only a medical professional can provide.
First, PC patients must understand that the physician will not have a treatment or a cure that is unknown to others, and a physician who says there is no current treatment is correctly informed. While we hope this will change as treatments are developed, no physician currently has an effective treatment for PC.
Next, physicians treating those with PC do not necessarily need to be specialists, but need to have an understanding of the genetic nature of the disease through access to current scientific publications.
The physician needs to recognize and respond to the urgent need for antibiotics or other intervention when an infection flares or cysts become inflamed. The intense and variable pain for PC patients should also be recognized.
Building a relationship of trust over time between a physician and a PC patient will result in benefits for both.
PC Project is always glad to provide support services to local physicians in any way needed, including telephone consultations relating to care for PC, journal articles, and up-to-date information regarding on-going clinical studies.
“In rare persistent diseases such as PC more healing occurs through communication, the sharing of knowledge and empowerment, than through medical treatments.”C. David Hansen, MD
The following are taken from the above presentation by C. David Hansen entitled Becoming an Informed Partner with your Physician/Dermatologist.
- Finding a Physician/Dermatologist
- The Doctors Visit(s)
- Your Healthcare Team
Finding a Physician/Dermatologist
- You probably need a dermatologist since PC is a skin disorder.
- Ideally your doctor should know about PC or is willing to learn.
- Most importantly you need to respect/like your dermatologist. You need to be able to communicate openly with him/her.
- The office staff need to be respectful and open and you need to be able to get along with them too.
- It’s all about forming a team with him/her to help care for your PC.
The Doctor’s Visit
- Don’t put it off if you have a problem – this is why you have to have good communication with the office staff.
- Be clear on visit intervals and what to do if you have an “emergency”.
- Have realistic expectations and goals and openly discuss this with your Derm.
- Be direct about the “teaching case” issues, especially if you are seen at a University – if you are not comforable, say “NO” in a nice way.
- Go to the visit with a checklist of the elements of your disease, their status and your ???’s.
Checklist #1 – Maybe every visit
- Hyperkeratosis: Optimum management techniques, frequency, prophylatic antibiotics/antimicrobials for fissues.
- Nails: Optimum management techniques, frequency of trimming, nail infections, draining.
- Pain Managment:
- Who gives you medications for Pain? Primary Care Physician, Dermatologist
- Pain Diary (triggers, effective remedies)
- How does the pain vary through the day
- Pain and activities (walking etc)
- Hormonal/emotional relationship
- Other factors like weather
- Specific Questions and Problems – cysts, follicular hyperkeratosis, leukokeratosis
Checklist #2 – Some visits
- Genetics/Genetic Counseling
- Prognosis: What is going to happen in the future
- Acute issues: Infections, etc
- Knowledge update: Do you have new information for your doctor (you may know as much or more about PC as your doctor does). Resources with new information to be shared.
- Do you need a second opinion? Best done by putting your doctor in contact with someone knowledgeable about the special problem you both need help with.
- Emotional issues around your PC.
- Children with PC – possible new mutations
- Adolescents with PC
- Self esteem issues
- Limitations and how to deal with them
- Management techniques
Your Healthcare Team
- Primary Care Physician
- Dermatologists/Pediatric Dermatologists – specialist interested in PC
- You may use or need a subspecialist such as
- Pain Management
- Physical Therapist
- Occupational Therapist