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Becoming An Informed Partner With Your Dermatologist

Becoming An Informed Partner With Your Dermatologist

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Becoming An Informed Partner With Your Dermatologist

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  1. Becoming An InformedPartner With Your Dermatologist Timothy Berger, MD Professor of Clinical Dermatology University of California, San Francisco

  2. Disclaimer 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”

  3. Outline • Finding a Dermatologist • The Doctor Visit(s) • Your Healthcare Team

  4. 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

  5. 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

  6. 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

  7. 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

  8. Special Circumstances • 1. Children with PC, new mutations? • 2. Adolescents with PC

  9. Your Healthcare Team • PCP • Dermatologist/Pediatric Dermatologist • Specialists: • Pain Management • Podiatrist • Physical Therapist • Occupational Therapist

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