Why Psoriatic Disease Is Misunderstood

Reviewed by Michael W. Smith, MD on December 01, 2020

By Diane Talbert, as told to Keri Wiginton

People often describe psoriasis as raised red patches with white silvery scales. As a person of color, when my psoriasis is active, it’s a thick, purplish hue with scales that crack and bleed. I itch like crazy.

I also have psoriatic arthritis. That’s a kind of inflammation that can affect the joints. I get serious fatigue, morning stiffness, swollen fingers and toes, and pain in my tendons.

So many people have said to me, "You have psoriasis? Isn’t that just dry skin?" With people thinking like this, we will always be misunderstood. By family, friends, and doctors.

Searching for Answers

I’m 62 now. Thankfully, I’m on a medication that helps manage my psoriatic disease. But that hasn’t always been the case.

When I was 5, the staff at my school feared my psoriasis was contagious. They sent me to the hospital on my first day. I had to stay there for 3 months. They had to call in a specialist who finally diagnosed me with psoriasis.

Continued

I don’t think most doctors in 1963 had ever seen a person of color who had more than 80% of their body covered in plaques. And some doctors said I didn’t have this disease because it didn’t look like what they thought psoriasis should look like.

I learned at a young age that I had to be my own best advocate. I started researching psoriasis as a teenager. To my surprise, I never came across one picture or reference to a Black person with it. Over the next 40 years, I lost count of the doctors who didn’t know how to treat me.

Psoriasis and Psoriatic Arthritis Aren’t Always Linked

In my 20s, I started getting aches in my joints and my nails started pitting pretty bad. This was painful because my skin would get really thick and lift off the nails. At the time, my doctors said this was due to my psoriasis. But they didn’t test me for psoriatic arthritis.

Continued

One doctor told me I was overreacting, but if the pain was that bad, I should take an aspirin. They said I was too young for arthritis, even though you could see the swelling in my hands. Instead, they diagnosed me with anxiety and depression.

After going to numerous doctors, I found a dermatologist who told me to go to a rheumatologist. I finally got a diagnosis of psoriatic arthritis at 50 -- 25 years after my first symptoms.

Finding Quality Care

I started a new biologic medicine at the beginning of the pandemic. But I’ve been on them for 20 years. These are drugs that change how the immune system works. They can slow down the inflammation process, and they work really well for psoriatic disease. But compared to white people, Black people in the U.S. are less likely to get this kind of treatment.

Module: video
inside the visit perspective video
 
Inside the Visit: Psoriatic DiseaseTom Garmon has been living with psoriasis for more than 40 years. Watch as he and Jonathan Weiss, MD, discuss his journey.330

[MUSIC PLAYING]



JONATHAN WEISS: So Tom, we've

known each other a long time.



TOM GARMON: Yes we have.



JONATHAN WEISS: What's

your recollections

about starting your journey

with psoriasis?



TOM GARMON: Well starting

the journey with psoriasis

was a long, long time ago.

1974 to be exact.

I just remember it being

frightening to hear the words,

there is no cure,

and that there's not a lot we

can do for it,

at that point in time

was devastating.



JONATHAN WEISS: How much

of your body

was covered with psoriasis

at that point, do you feel?



TOM GARMON: Ended up at 60%

to 65% covered with heavy plaque

psoriasis.



JONATHAN WEISS: Wow.



TOM GARMON: And it was bad.

You did everything you could

to try to hide.

And I hate to say I was hiding,

but that was what I was doing.



JONATHAN WEISS: Early on, what

actually worked for you first?



TOM GARMON: I don't know

that anything worked.

Some things worked

toward slowing the progression

down.

I started out with the coal

tars, light treatments,

your body being wrapped in Saran

Wrap.

And that was the science

of the day.



JONATHAN WEISS: When you and I

started out, all we really

had were the topical steroids

and emollients or moisturizers.

And going further even

with the topical treatments,

we have new topical therapies

that are coming out.

So even for people with limited

psoriasis,

or patients who

are on a biologic

but have a few small plaques

of psoriasis, there will be

new products coming out

in the topical realm that will

be great.



TOM GARMON: I remember very

vividly when you grabbed

my shoulder and said,

you can't give up now Tom.

There's a future.

Don't give up now.

There's things that are going

to be available.

It's going to take time.

I didn't know it was going

to take that long,

but it did take time.

And then the science,

the medicine caught up

with the problems.



JONATHAN WEISS: Back when I was

telling you

about the medications being

developed, the ones that I knew

about then, the biologics

weren't even a concept.

And so I wasn't even referring

to what we have now.

I think you're right.

We have to have trust that as

long as there is a true need

of a large number of people,

new treatments do get developed.

You were on several pills

for a while, and they all had

their side effects.



TOM GARMON: Methotrexate was

a drug that was used.

It helped, but the side effects

for me were awful.



JONATHAN WEISS: I remember that.

Now you were one of our earliest

patients

on the biologic medication.



TOM GARMON: Yes, I responded

real well

to the biological drugs,

or the biologics.

And I went from 65% covered

to basically clear in 12 to 16

weeks.



JONATHAN WEISS: That was probably

one of the most gratifying parts

of my career,

as someone who focused

his career on treating

psoriasis,

was seeing your response

to the initial biologics.



TOM GARMON: To me, the biologics

have been the answer

to my prayers.

And I realize that is not

the case

for every psoriasis patient.



JONATHAN WEISS: Right.

Now another issue with you

Tom that we've had

over the years

is we've had to transition

to medications.

You were on a biologic that got

taken off the market.

And quite honestly, I was very

nervous about how you would

respond.

And you did beautifully

on that medication.



TOM GARMON: I was calling

the FDA, anybody that would

listen to me, about how do we

keep this medicine out there?

And then you got me calmed down,

and said, let's find something

else that's going to work

for you.



JONATHAN WEISS: I'm going to give

you a hypothetical here.

If for some reason

the current drug stopped working

for you,

what would be

your first thought?



TOM GARMON: My response to that

is, who has guided you this far?

You contact your doctor that you

have faith in, and you say, OK,

what are my alternatives?

The pharmaceutical companies are

developing new drugs daily.

What do you recommend we try

next?

Is this a class issue,

or is it simply my body

and this medicine issue?



JONATHAN WEISS: Right.

We have so many choices now,

and it's so great.

Now we've changed our standard

to where we don't like to accept

less than 90% clearance.

And if one biologic's only

giving 50% clearance,

we will switch.

I think we are on the cusp

of precision medicine

that will allow us to know

the percentage likelihood they

are to respond

to different classes

of biologics,

using the simple skin test

or blood test

or that sort of thing.

So that's pretty exciting.



TOM GARMON: Oh yes it is.

In the game of life,

you've been dealt a poor hand.

Let's just use that term.

But you have no choice

but to play it.



JONATHAN WEISS: I think we may be

on the cusp of even greater

things for psoriasis.

Greater results

for our patients.

So--



TOM GARMON: That sounds

like a winner.

I appreciate you.



JONATHAN WEISS: Likewise Tom.

I really appreciate you.



TOM GARMON: You take care.

Jonathan Weiss, MD, Dermatologist, Snellville, GA<br>Tom Garmon, Patient/delivery/aws/ae/40/ae404ec0-2d28-417e-9e6d-25d839235480/4b7b3c51-f294-4ad7-be3d-2637c5d4ce60_305946_1_inside_the_visit_perspective_psoriatic_disease_012621_,4500k,2500k,1000k,750k,400k,.mp401/27/2021 12:00:0018001200inside the visit perspective video/webmd/consumer_assets/site_images/article_thumbnails/video/sf305946_1_inside_the_visit_perspective_psoriatic_video/1800x1200_sf305946_1_inside_the_visit_perspective_psoriatic_video.jpg091e9c5e820f0119

I believe we, as minorities, struggle so much more with this disease. I’ve spoken with so many people of color who’ve never heard of biologics. I honestly don’t think anyone is going to tell you about them if you don’t have adequate insurance to pay for them. Growing up, I didn’t have great medical coverage, so I didn’t get the best treatment. I also believe that’s why it took me longer to get a proper diagnosis.

Continued

To be honest, I didn’t understand what “disparities in health care” meant when I was younger. But I remember a doctor telling me to add Vaseline to my medication so it would last a whole month. I had scales on 80% of my body, and that’s all he said he could do for me. I spent years taking treatments that didn’t work.

I think we need to talk about these inequities. Because, speaking from experience, low-income people get different treatment in our medical system. We do get overlooked.

How to Find the Right Doctor

If you have psoriatic arthritis -- or think you do -- see a rheumatologist. I’ve had psoriasis for more than 50 years and psoriatic arthritis for 30 years. But I only saw my first rheumatologist about 10 years ago.

And find a dermatologist who’s familiar with psoriatic disease. The one I have now is very knowledgeable. But many I've had in the past haven’t been.

Continued

It’s also helpful that my dermatologist and rheumatologist are on the same page about my treatment plan.

Before you see your doctor, try to keep a journal of your symptoms. That may help point your doctor in the right direction a little quicker. You’ll want to keep track of things like:

  • Swelling in your fingers or joints
  • Pits in your nails
  • Swelling elsewhere, like your heel
  • How tough it is to get out of bed in the morning
  • How tired you are
  • How often you feel tired

Continued

And when it comes to your doctor, don’t let them shut you down. As I’ve gotten older, I’ve had a chance to look back at how doctors have treated me. They would make decisions and not involve me in my treatment plan. That was a problem for me. I felt like they were telling me to be quiet.

Here are some other problematic things I’ve heard:

  • The pain is all in your head.              
  • I don't know what to do to help you.
  • We did all the tests, and we can't find anything wrong.

And my all-time favorite, which came from an older rheumatologist: Black people don't get psoriasis.

Advocating for Women and People of ColorAlisha Marie Bridges was diagnosed with psoriasis at 7 years old, and she was mocked by other children. She has turned something that caused her pain into something she uses to help others.282

ALICIA MARIE BRIDGES: I remember

that very first time I posted

a picture of my skin.

I took it down.

It was so overwhelming.

I was getting anxiety.

Then I was like, let me just

put it back up there

and see what happens.

And the outpour of support

that I got, it just

encouraged me to do more.

And so that's how I began.



My name is Alicia Marie Bridges.

So I first encountered psoriasis

when I was seven years old.

I was 90% covered.

Having psoriasis at such

a young age, I didn't realize

how it would impact my life.



I remember being

in a swim class, having on

a swimsuit.

Of course, all my classmates

were asking me like, what is

that on your skin?

I started to become

self-conscious about it.

So I would just start lying.

That's when I started covering.

I started hiding.

Once I got to middle school

and high school,

you start to try to figure out

who you are.

There are different activities

that you want to be a part of.

But because of my psoriasis,

I always shied away

from those type of things.



It's definitely taken a toll

on me physically, mentally,

and emotionally.

So I had hid my psoriasis

for a very long time.

I remember just feeling tired

of what I was going through,

and I felt like I was going

through it alone because I

didn't know anybody else

with my disease.



So I remember writing a blog

post called my suicide letter.

And the letter highlighted what

I went through mentally, living

with psoriasis,

but it was about killing

those parts of myself that

wouldn't allow me to live--

the low self-esteem,

the embarrassment, the fear.



People read the letter,

and they sent it to the National

Psoriasis Foundation.

And they asked me to come

to a volunteer conference

that they were having

the following year.

I went to that volunteer

conference, and now I went

from knowing people online

to knowing people in person.

Ever since then, I've just

dedicated my life to being

a psoriasis advocate.

And not only a psoriasis

advocate, but an advocate

for all people who have

something that's negatively

impacting them.



Getting with the National

Psoriasis Foundation connected

me with a lot

of different opportunities,

connecting with other patients

with psoriasis, and with doctors

and researchers, and also

connecting with Congress.

I've spoken to Congress at least

four or five times.

And we have definitely made

a difference.

We've definitely moved forward

into changing laws

so that patients can get

the medicines that they actually

need.



The most important thing I would

share with someone who has been

recently diagnosed

is to find a community.

I would also say getting

with the National Psoriasis

Foundation and taking advantage

of their resources.

They have a one to one

mentor program.

They have a patient navigation

center where if you need

a doctor

or you need help trying to fight

your insurance company,

they have navigators on site

that can help get you what it is

that you need.

Find a doctor involved

in clinical research.

Because a doctor who

is in clinical research

is really going to take the time

to find you what it is that you

need.

And they've worked with so many

different patients.

They can tell you the side

effects of what you need

to worry about.



Something else I would say

is take care

of your mental health

because if that's not right,

it doesn't matter who you're

interacting with,

your treatment, your doctors,

the NPF, you're always going

to feel like something is off.



I hope that my willingness

to tell my story

gets other women

and other African-Americans,

and other people of color

involved in sharing their story

about what they're going through

with their disease.

I finally feel like I'm where

I'm supposed to be.

I'm really happy that I've taken

something that negatively

impacted me and hurt me

and used that as a way to help

other people.



Working as an advocate

has really allowed me to get

intimate with people in that way

and really understand what

people are going through.

And it's helped give perspective

to myself.

What I was feeling, what I was

thinking, that's normal.

I just feel so purposeful,

and I know every little thing is

getting me to my ultimate goal.

Alisha Marie Bridges/delivery/aws/91/73/9173fc47-043a-48e6-ba89-6e9b943089dc/39cf42fd-a2b3-48da-9e22-e284965bdca2_305946_1_advocate_perspective_psoriatic_disease_alisha_made_peace_skin_012621_,4500k,2500k,1000k,750k,400k,.mp401/27/2021 12:00:0018001200advocate perspective psoriatic alisha video/webmd/consumer_assets/site_images/article_thumbnails/video/sf305946_1_advocate_perspective_psoriatic_alisha_video/1800x1200_sf305946_1_advocate_perspective_psoriatic_alisha_video.jpg091e9c5e820f0117

Get Checkups

My regular doctor knows about my psoriatic disease, but that’s not why I go to her. I know that I need to have regular checkups because of the other conditions that come along with having psoriasis and psoriatic arthritis. I have:

  • High blood pressure
  • High cholesterol
  • Diabetes

My doctor and I need to monitor them all.

Another reason I see my regular doctor is that she might see something that my specialists miss.

Don’t Give Up

Make sure you give any new treatment a chance. Even if you’re on the right medicine, it can take a few months for it to work. It’s been trial and error for me with treatments for 50 years. But so much has happened in the medical community during that time, and we have so many effective choices now.

Diane Talbert, 62, found out she had psoriasis when she was 5. She started having symptoms of psoriatic arthritis in her 20s. She is a blogger, speaker, and advocate for those with psoriatic disease and other chronic diseases. She founded "Power Beyond Psoriasis," a nonprofit group. Her No. 1 supporter is her husband, Alvin.

WebMD Feature

Sources

Diane Talbert, founder, Power Beyond Psoriasis.

National Psoriasis Foundation: “Biologics,”  “Related Conditions of Psoriasis.”

Journal of Investigative Dermatology: “Racial Differences in Perceptions of Psoriasis Therapies: Implications for Racial Disparities in Psoriasis Treatment.”

Rheumatology and Therapy: “Psoriatic Arthritis and Burden of Disease: Patient Perspectives from the Population-Based Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP) Survey.”

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