PRP Self-Advocacy — The Clinic Visit

 

When was your last dermatology clinic visit? Can we assume that your dermatlogist followed the established protocol for a 15- to 20-minute visit. Here’s the $64,000 question: Who was your advocate in the exam room? Or, were you a self-advocate?

Clinic visits provide four opportunities for patients to become self-advocates.

✱   Pre-Clinic PREPARATION

Don’t go to your PRP clinic without five questions to ask and information to share. Most dermatologists will recognize the Dowling Oration and the contribution that Dr. Andrew Griffiths made in setting the prevalence of PRP at one in 400,000.  What will come as surprise is sharing that in 1828, James Shooter was admitted to St. Bartholomew’s Hospital in London and became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris.

✱   Clinic PARTICIPATION

The dermatologist is REQUIRED to do specific tasks. They ask questions and take notes. They must cross the t’s and dot the i’s; You should take notes and ask questions and take notes too. The best question: Why?

✱   Post Clinic EDUCATION

Only one in 400,000 are diagnosed with PRP and YOU may be one of the few PRP patients your dermatologist will ever treat in their career. Share. orem ipsum dolor sit amet, consect detur adipiscing elit. Lorem ipsum dolor sit amet, consect detur adipiscing elit.

 

✱   Solicit Referrals: INITIATION

Take the initiative and get referrals to  a clinical psychologist, ear specialist, opthamologist, and podiatrist. The odds are that you will need the services of a specialist “down the road”  with a problem that is likely to need more expert care than a dermatologist can offer.

✱   Perform Due Diligence: INVESTIGATION

And while they are at it, how about a referral to the Genetic and Rare Diseases (GARD) information Center where they will be able to access the GARD PRP Report with its linksthe PRP Alliance and the National Organization of Rare Disorders (NORD). 

The NORD PRP Report is essential reading for every newly diagnosed PRP patient and their caregiver(s). Follow the links and connect with the  PRP Facebook Support Group and a link to the PRP Survival Guide.


Standing Up for Your Health

Standing Up For Your Health — Self-Advocacy for Patients With Rare Diseases  ipsum dolor sit amet, consectetur adipiscing elit. Phasellus laoreet sit amet orci ac porta. 

✱   Build a healthcare team

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✱   Be PRP savvy

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✱   Exploit every clinic visit

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✱   Maintain a journal

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✱   Build a Circle of Support

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LEARN MORE about Standing Up For Your Health — Self-Advocacy for Patients With Rare Diseases.