How to find a PRP-savvy Dermatologist
It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. While that estimate may be totally bogus, we can say without fear of contradiction that very few dermatologists will consider themselves PRP savvy.
There are at least four reasons to seek out a PRP-savvy dermatologist:
- To obtain a second opinion and ask the question: “Do I really have PRP?”
- To find a local dermatologist who has prior experience treating PRP
- To find a more inquisitive dermatologist who wants to become PRP-savvy
- To find a dermatologist more supportive of your needs as a patient with PRP
While the best case scenario is a referral from a fellow PRP patient or caregiver to their PRP-savvy dermatologist. the next best step in the U.S. is Find-A-Derm. The American Academy of Dermatology (AAD) has a great feature on their website. “Find-a-Derm” can help PRP patients and caregivers identify dermatologists who have the potential for PRP savviness.
- Enter your ZIP Code
- Select “psoriasis” in the SPECIALTY pull-down menu. Dermatologists who self-identity themselves as specializing in psoriasis keeps you prospect list more manageable.
- Click SEARCH
The resulting list provides basic information:
- Distance from your ZIP Code
- Name of the dermatologist with a link to more information, e.g., clinic name, full address, office hours, medical training of the dermatologist
- Telephone number
MAKING THE CALL
When you call the dermatology clinic’s telephone number, it is unlikely that you will speak to the dermatologist. You will probably be routed to a person or THE person responsible for signing up new patients. That person may or may not be a healthcare professional, e.g., receptionist. Remember that you have an über rare skin disorder. When it comes to PRP, the person at the other end of the phone is predictably clueless. They are, however, the gatekeeper to the dermatologists that treat patients with skin disorders. Here is one version of a PRP inquiry with one statement and four questions..
Start with a statement
“I have a very rare skin disorder and want to find a dermatologist who feels capable of treating pityriasis rubra pilaris.
Set your search criteria with a question
“Are there any dermatologists at your clinic who have treated a patient diagnosed with pityriasis rubra pilaris?
Accept the fact that the staff person on the telephone will NOT know the answers to your question and will be FORCED to check with the dermatologist(s). In all likelihood the new patient gatekeeper will be instructed to call you.
“When you confirm their PRP experience, will you call me or should I call you back? My phone number is 555-555-1212?
IMHO — A failure to respond to your questions is both unprofessional and rude. Food for thought — A lack of experience treating PRP does not automatically disqualify a dermatologist. Ginny M (South Carolina), a PRP patient with Juvenile Onset PRP and mother of three PRP children, believes that the best dermatologist is one who wants to learn. “A dermatologist who thinks they know it all is not as effective as a dermatologist who wants to know it all.”
If the Needle you seek is in the UK
Editor’s Note. The following advice was shared by Deb S, the caregiver for her husband (onset in 2011 at the age of 58).
In the UK with our NHS system, the process is firstly go to the dermatologist closest to you in your NHS trust as recommended by your GP.
There really is no selection process, but you could keep on requesting second, third, or fourth opinion.
The British Association of Dermatologists (BAD) might be a good private health search.
Larger teaching hospitals are more likely to be productive.
Asking for contacts through this PRP Facebook Support Group site will usually give responses from other people in your area and the good/bad experiences they have had and access to different drug treatments from that NHS trust.
It really is a postcode lottery of different treatments available. Biologics, for example and gene testing might not be available everywhere under the NHS. The links between silo departments of dermatology, rhumatoid arthritis, ophthalmics, allergy, oedema treatment and pain clinics can be sporadic because different centres may be based in different NHS Trusts and communication between them a challenge. These different areas might be important at different times for you during the phases of PRP.
Add to that paediatrics and social services and the availability of resources can be very extensive (or sadly limited).
Find out from the posts, who has achieved what, in your country and go for the best support you can in your area. Be prepared to ask/argue ..x.. had ..z .. treatment/support. Might it help me? Local rare diseases organisations in might also help point you to different dermatologists.