Author: books

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 disease that involves my joints. 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.

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.

Skin and Joint Involvement 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 joint inflammation.

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, 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 disease of my joints 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.

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.

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 disease of the joints — or think you do — see a rheumatologist. I’ve had skin involvement for more than 50 years and joint inflammation 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.

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

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.

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 psoriatic disease. 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 joint inflammation 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.

By Tami Seretti, as told to Keri Wiginton

For me, one of the hardest things about psoriasis is that people can see it. And sometimes they have really odd reactions to it. When my disease is active, some people tell me I need to use a certain soap or shampoo, as if I don’t bathe. Psoriatic disease of the joints is the exact opposite. You can’t see it. People will tell me it doesn’t look like there’s anything wrong with me.

They’ll ask, “Why is this so hard for you?”

I’ve felt like I was at war with myself. I’ve had my thumb joints replaced because of psoriatic disease. I’ve lost my hair. I basically went bald, which is not the best thing for a woman.

I’ve spent a lot of time hiding. But I finally got to a point where I decided I was done.

I was done feeling ugly.

I was done feeling dirty all the time.

And once I accepted my condition — and met others going through the same thing — I felt like I needed to talk about it.

I have a lot more self-esteem now that it seems like the whole world knows.

No Longer Hiding

I used to avoid sleeveless shirts because I’d get psoriasis under my arms. I’d have to cancel plans at the last minute because I wouldn’t be able to wear clothes. I have inverse psoriasis. That means I get it in my skin folds and groin. And who wants to say, “I can’t wear underwear because it cuts into the broken skin in my legs.”

But I finally came out and said, “This is me. This is what I have. This is what I live with. If you want to know about it, I can tell you. If you don’t, that’s fine. Just don’t insult me.”

My friends said my past actions made a lot of sense when I finally opened up about my condition. That was such a relief. I started to feel better about myself. Plus, I started to feel better physically. I didn’t have as much itching and burning because I didn’t have as much stress.

I’d held that in for so long, not realizing I was being my own worst enemy by hiding.

Finding the New Me

I used to go to the gym two or three times a week for hours. Nothing was going to stop me from my workouts. I just pushed through my joint pain. Then I would end up in the bed for 3 days. But one day, a few years ago, I said “This is crazy. I need to find a new hobby and stop hurting myself.”

That’s when I became a “One to One” mentor for the National Psoriasis Foundation. It’s a program that pairs people like me — someone who’s lived with psoriasis for years — with someone who’s just been diagnosed. It’s my new passion. I want to make sure that the next person’s road isn’t quite as hard as mine was.

I get a lot of comfort from helping others. When I found out I had psoriasis, no one I knew openly talked about it. I felt so alone. Now, I have a community to belong to.

Don’t get me wrong. My husband is a fantastic cheerleader. But to sit with somebody who actually has it, who actually knows what I’m talking about, is the most amazing feeling in the world.

It Gets Better

You may think that your diagnosis is the end, but it’s actually the beginning. Now you know what’s causing your symptoms. You’ll find a medicine that works, and you’ll feel better. You’ll have a life again. You might not have the life you used to have, but you can have one that’s meaningful and productive.

Nobody believes me when I tell them that, but it really is true. I used to be a wallflower, always standing in the back. Now I meet with my state representatives or I go to Capitol Hill to talk about what it’s like to have psoriasis. I do all of these things that I never thought I’d be able to do.

And there’s a major difference in my symptoms pre- and post-diagnosis. My scalp used to be thick with scales. I would get psoriasis so bad in my ears that I couldn’t hear. I went to the emergency room once because I couldn’t put any weight on my ankles. 

It took me a while to find a treatment that worked. But now I take a medication that has me about 85% clear with no new joint pain. I’m calling that a win. Some of my psoriasis is still visible, like on my scalp and ears. But now I look in the mirror and I’m not embarrassed. That’s a big thing for me.

Mentally, I feel the best I have in 20 years.

Tami Seretti, 53, was diagnosed with psoriasis when she was 27 and psoriatic arthritis at 38. She is active with the National Psoriasis Foundation. She also advocates for Clara Health’s Breakthrough Crew and the Arthritis Foundation. She lives with her husband, mom, three cats, and a dog in Center Township, PA.

Sept. 29, 2022 — The Biden administration has announced $8 billion in public and private commitments toward fighting hunger and improving nutrition in the United States.

“This goal is within our reach,” President Biden said Wednesday during the first White House summit on hunger in 50 years. “In America, no child should go to bed hungry. No parent should die of disease that can be prevented.”

The White House Conference on Hunger, Nutrition and Health comes as food costs are rising, supply chain issues remain from the pandemic, and food-related ailments continue. The administration announced a “bold goal” of ending hunger by 2030 and increasing healthy eating and physical activity.

Among the key proposals:

• Expand free school meals to 9 million more children by 2032
• Allow more people to get food stamps
• Help with transportation for people who don’t live near grocery stores and farmers markets
• Increase money for nutrition programs helping seniors
• Reduce food waste, since a third of all food in the United States goes to waste, the White House says.

Many of the efforts need congressional approval. Biden can take some action through executive order.

The Washington Post reported, “The pervasiveness of diet-related diseases creates broader problems for the country, White House officials said, hampering military readiness, workforce productivity, academic achievement and mental health.”

The newspaper also reported that the U. S. Department of Agriculture says that 10.2% of U.S. households were “food insecure” in 2021. That means they didn’t have enough food to meet everyone’s needs.

CNN said that more than 100 organizations have committed to help pay for Biden’s initiatives, including hospitals, health care associations, tech companies, philanthropies, and the food industry. 

At least $2.5 billion will go to start-up companies focused on finding solutions to hunger and food insecurity, according to the White House. 

Sept. 29, 2022 — People who didn’t get the monkeypox vaccine were 14 times more likely to get infected with the virus, data from the CDC says.

“There have been limited data on how well the Jynneos vaccine performs against monkeypox in real-world conditions,” CDC Director Dr. Rochelle Walensky said. “These new data provide us with a level of optimism that the vaccine is working as intended.”

CNN reported that health officials are optimistic about the effectiveness of the two-dose Jynneos vaccine – and the possibility of eliminating the current outbreak in the country.

“We are cautiously optimistic about the study and think if we continue to get vaccines out to those that are at highest risk for disease, and if we continue to promote the behavioral changes that we know work, that the combination of those two will allow us to continue to see decreases in cases and hopefully eliminate the current monkeypox outbreak in the United States,” one senior health official told CNN.

The findings don’t account for changes in behavior or other factors, like the durability of the vaccine and how long protection might last.

“What it doesn’t let us do is fully disentangle pieces of this that may be behavioral change pieces that may be related to sexual networks or to who people are coming into contact with,” the official said. “We know that at the start of the monkeypox outbreak, a lot of gay and bisexual men changed their behaviors.”

More than 800,000 doses of monkeypox vaccine have been administered in the United States. The CDC says 1.7 million men who have sex with men are at highest risk.

CDC data show that the average of daily new cases has been coming down since mid-August.