Community Views: What You Wish Your Dermatologist Knew
When you find a good dermatologist, you hold tight. I’ve held so tight to ours over the past 18 years, there’s little my doctor doesn’t know about me or my family.
Our doctor started seeing my son at age 4 after getting an incorrect diagnosis of ringworm. He took one look at my son’s scalp and was able to give a correct diagnosis of psoriasis. Later it was confirmed with a biopsy. Our dermatologist even cautioned us to be on the lookout for the plaques spreading to other parts of his body.
Within a few months, my son was covered head to toe.
Much more than a skin condition
At that time, our dermatologist kept asking, “Who in your family has psoriasis?” I had no idea. It wasn’t until my own diagnosis a few years later that I could finally answer that question.
For our family, we found the best dermatologist. He listens to all our worries, problems, and fears. He informs us of medications that could be beneficial, should our current treatments stop working. He has called us on the weekends just to check up on us and make sure we are ok.
And very importantly, he gets it. He understands that psoriasis is much more than a skin condition and that in order to manage psoriasis, he needs to treat the whole patient.
What our doctors need to know
I am lucky, and so is my son. Not every patient has this wonderful experience and relationship with their medical professionals. As a National Psoriasis Foundation One to One mentor, I hear often from others in the psoriasis community that many dermatologists simply don’t listen.
This was echoed recently on the PlaquePsoriasis.com Facebook page when this community responded to the question: “What do you wish your dermatologist knew about managing life with psoriasis?”
Actually treat psoriasis
Sometimes, it seems you know more than your doctors. Sure, dermatology is a wide field, but shouldn’t dermatologists be experts in psoriasis? Apparently, there are many who are not, and finding one who is can be time-consuming and frustrating.
Treatments do vary from patient to patient and finding the right one often takes time, but our doctors should have a starting point and a general direction of where to go next if the treatment or course of action fails.
“I have had terrible luck over the past 25 years with dermatologists. Seems like all they want to do nowadays is sell Botox. I'm done. I don't even have one anymore. I just see my rheumatologist. He's awesome.”
“I wish I would if been more educated about it. Went for years and nothing. That was 30 years ago. I haven’t been back. My primary takes care of me now. I researched on my own.”
All plaques are not equal
Our Facebook community made sure to weigh in and express disappointment in dermatologists that assume all psoriasis plaques look and feel the same to every patient who walks through their office doors. Psoriasis can manifest differently among cultures and skin types.
“Different skin colors reacts differently.”
“All skin isn’t the same in every culture.”
Cost of medications are very expensive
From creams and ointments to pills and biologics, treating psoriasis with medication can be very costly. Each year, I have to hold my breath that my son and I can continue to get prescription assistance for our biologic medication.
Without this assistance, we would not be able to afford our biologic, which is the only medication has that been able to manage our psoriasis well. And, with your Facebook comments, I know we are not alone.
“The drug treatments are astronomical and insurance companies often will not allow what the doctor prescribes. There should be serious education offered by medical specialists to the pharma and general practitioners.”
Diets might work
Not all patients have good luck with eliminating foods to reduce their skin inflammation, but many do find the benefits. It is unfortunate that some dermatologists don’t recognize this and continue to just push prescription treatments.
“Changing your diet can improve the size or severity of it! And nobody ever discusses this! They jump to meds immediately.”
“Many of us are afraid to take biologics.”
“It has a lot to do with diet. Look beyond prescriptions.”
Treat the Whole Patient
Managing psoriasis also means treating the whole patient, including mental health and pain. The physical plaques are only one part of the disease.
“Stress, stress, stress! It’s a thing for starting flare-ups. Take that hour for ‘me time.’”
Simply, “Mental stress.”
“Some days it’s all you can do to get up out of bed and move around!”
To all those who shared their frustrations on Facebook, we hear you and thank you for opening up to us. I do count myself lucky that our first doctor is our last doctor.
But if your doctor-patient relationship is failing, and you find the need to switch medical professionals, I wish you all the strength and courage it takes to keep looking for the right doctor for you.
Does your psoriasis skin feel out of control? How are you managing?