Becoming an informed partner with your dermatologist
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Becoming An Informed Partner With Your Dermatologist. Timothy Berger, MD Professor of Clinical Dermatology University of California, San Francisco. Disclaimer.

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Becoming An InformedPartner With Your Dermatologist

Timothy Berger, MD

Professor of Clinical Dermatology

University of California, San Francisco

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This is NOT a lecture, but some thoughts from a dermatologist who is NOT an expert on PC but who takes care of patients with PC and other rare diseases. It is my views about how a patient and doctor can work together in the setting of a complex/rare disorder with limited “Answers”

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  • Finding a Dermatologist

  • The Doctor Visit(s)

  • Your Healthcare Team

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Finding a Dermatologist

  • 1. You probably need a dermatologist since PC is a skin disorder

  • 2. Ideally your doctor should know about PC, or is willing to learn

  • 3. Most importantly you need to respect/like your dermatologist. You need to be able to communicate openly with her/him.

  • 4. The office staff need to be respectful and open and you need to be able to get along with them too.

  • 5. It’s all about forming a team with her/him to help care for your PC

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The Doctor’s Visit

  • 1. Don’t put it off if you have a problem—this is why you have to have good communication with the office staff!

  • 2. Be clear on visit intervals and what to do if you have an “emergency”

  • 3. Have realistic expectations and goals and openly discuss this with your Derm

  • 4. Be direct about the “teaching case” issue, esp. if you are seen at a University—if you’re not comfortable, say “NO!” in a nice way

  • 5. Go to the visit with a checklist of the elements of your disease, their status and your ???’s

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Checklist #1Every Visit

  • 1. Hyperkeratosis: Optimum management, techniques, frequency, prophylactic antibiotics/antimicrobials for fissures?

  • 2 Pain Management (IT EXISTS!!!)

    • A. Who gives you meds for pain? PCP, Derm

    • B. Pain diary (triggers, effective remedies)

    • C. How does the pain vary thru the day

    • D. Pain and Activities (walking, etc)

    • E. Hormonal/emotional relationship

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Checklist #2Some Visits Perhaps

  • 3. Genetics/Genetic Counseling

  • 4. Prognosis: What is going to happen in the future

  • 5. Acute issues: Infections, etc

  • 6. Knowledge update: Do you have new information for your doctor? (you may know as much or more about PC as your Derm does). Resources with new information need to be shared

  • 7. Are you in a situation where you need to get a second opinion? This is usually best done by putting your dermatologist in contact with someone knowledgeable about the special problem you both need help with

  • 8. Emotional issues around your PC

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Special Circumstances

  • 1. Children with PC, new mutations?

  • 2. Adolescents with PC

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Your Healthcare Team

  • PCP

  • Dermatologist/Pediatric Dermatologist

  • Specialists:

    • Pain Management

    • Podiatrist

    • Physical Therapist

    • Occupational Therapist

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My opinion: In most cases, in rare persistent diseases more healing occurs through communication, the sharing of knowledge, and empowerment, than through medical treatments.