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.
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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.
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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.
[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.
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.
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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.
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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.
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.
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.