Alisha Bridges has lived with Plaque Psoriasis (PsO) and Psoriatic Arthritis (PsA) for almost three decades. At seven years old, she started experiencing itchy, flaky, inflamed skin, which led to a diagnosis of plaque Psoriasis during a time when public awareness about PsO was minimal. Alisha encountered a barrage of stigma and misconceptions about her skin and struggled with low self-esteem throughout her youth and adolescence.
Since then, she has dedicated her entire life to health advocacy. Her most notable work comes from volunteering with The National Psoriasis Foundation. She also had the privilege of speaking with members of Congress to advocate health legislation for PsO research. Feeling empowered by supporting the education of people about PsO, she continues to raise awareness about the disease. She discusses these topics on her website, Instagram, Facebook, Twitter, and YouTube.
I had a great opportunity to interview Alisha Bridges; she has given great information and insight into what it is like to have PsO and PsA. As we spoke, the information was very helpful and insightful, and it has opened my eyes to certain things that I didn't know about treatments. Her journey is amazing, as you will read.
Q: Could you personally explain to me what has been your experience with psoriasis? I know the information that I read said you were diagnosed at seven.
A: Yes. I was first diagnosed with psoriasis after a bad case of chickenpox at seven years old. My grandmother noticed that the scars that you typically get with chickenpox were kind of manifesting into something else. So she took me to the dermatologist, and they confirmed that I had plaque psoriasis. So I've had psoriasis for almost three decades now.
I was 90% covered, probably up until maybe seven years ago. And then, when I was a teenager, and even on and off now, I typically deal with joint pain, especially in my lower back and knees. And I remember being a teenager living in Michigan, where the weather's really cold, and sometimes waking up with this pain in my knee like fluid was on top of it. Not even realizing that even at that time, I was dealing with PsA. So, it's been a journey.
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Q: I know it's a hereditary disease. My mother has scalp psoriasis, so my siblings and I have had it since birth. Does anyone in your family have psoriasis?
A: On my father's side, I have a cousin who has scalp psoriasis, and I think he dealt with it as a teenager. I still talk to him today. And I don't think his psoriasis is as bad as it was when he was younger, but it's definitely in my family.
I let Alisha know that I, too, had the same experience with my scalp psoriasis being worse when I was younger; I also mentioned to her that I have flare-ups, like every time I get pregnant, for some reason afterward with the hormone change and the weather, it goes to my face. Then, I lose hair in these two spots around my hairline. She informed me that she typically hears the opposite. Many women say they have psoriasis, and it kind of goes away once they get pregnant. So that's interesting that it's almost the opposite.
Q: So, you said you have both plaque psoriasis and psoriatic arthritis, right?
A: My psoriatic arthritis is mild, and then my PsO, when I'm not on effective treatment, is severe. I'm about 90% covered.
Q: Right. What is kind of the signs and symptoms that people can notice to go get checked out before it gets worse, like you're saying, 90% covered?
A: Well, sometimes that's hard to know because sometimes what happens is a sickness, environmental factor, or some type of stressor that can make it hit you dramatically all at once. Everybody's experience is different. Sometimes it is a gradual flare, but for others, it is severe right off the bat. So I would say with plaque psoriasis, you will have dry, itchy, inflamed patches of skin. And this is typically covered with scaly patches, which will present differently depending on your skin tone. They can usually appear anywhere on the body, but typically on knees, elbows, and skin folds.
With PsA, it can start as pain in your fingers, your feet, your lower back, your elbows, and even your neck. It tends to happen in the larger joints. Some people will have pain here or there, and then if they don't get it checked out, it could gradually get worse. This is especially happening with younger people because we tend to say, "Oh, well, maybe I worked out too much," or "I lifted that box incorrectly”. We put every excuse on it other than saying; you know what, this could be arthritis. It's taboo to be a young person and have joint-related issues.
Q: I read 30%of people with Psoriasis do develop psoriatic arthritis. So, what's the connection between the two? How does PsO transform into PsA?
A: They're both autoimmune diseases that affect the skin and joints, and those go hand in hand. When your immune system is impacted where it affects the skin, that same area of your immune system can also affect your joints.
Q: What do you do daily for this cause, or how do you advocate for others and be the voice for others who maybe can't advocate for themselves?
A: I am involved with the community in several ways:
- Working with National Psoriasis Foundation.
- I help with a lot of research initiatives locally.
- I've also done mentorships in various capacities.
- A blog where I highlight my own story, stories of others, issues that we are currently facing in the community, and solutions to that.
Recently I had a mom reach out to me on Instagram about her daughter being newly diagnosed, and her daughter just so happened to go to a local college here. So, I could meet with her and talk about my experience and then provide her with additional resources to help her condition.
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Q: Why do people of color experience additional barriers? With psoriasis specifically, and then in general?
A: I think there are various reasons people of color face unique challenges. One, there is an issue in healthcare providers' knowledge of how this disease presents in people of color. When we talk about schooling, a lot of times, when you look up pictures of people with these conditions, you don't see a lot of Black and brown people represented. I work with many research initiatives, and we have to review clinical trials. Sometimes in those clinical trials, they're not very diverse. If you don't necessarily have a lot of diversity, then it's going to be hard for you to understand and learn how this disease impacts people differently. Then another way is their lack of knowledge; it is not something that is being given to them as a norm.
For Caucasian people or lighter skin people, this disease shows up as red or pink plaques. Where for a person like me with brown skin, it is going to show up as purple or brown. Suppose the healthcare provider has not had enough experience with people of that skin tone. In that case, they might not necessarily recognize it as psoriasis, and it could be misdiagnosed as something else. Another issue is limited access to healthcare providers. People of color face many barriers regarding transportation, insurance coverage, and work schedule flexibility. It makes it more difficult to see a physician and do some of the required treatments. For example, phototherapy requires you to go to the hospital anywhere from three to five times a week.
Limited access to treatment is another issue. People of color have less access to care and are typically undertreated compared to our white counterparts. Especially when it comes to biologics. Biologics are injections that you can use to regulate the part of the immune system causing psoriasis. And it's almost 70% lower among people of color with psoriatic disease. And these are very innovative treatments that can put people in remission, so they're needed. But we don't have access to them like other people. So that's a problem, and what I have been seeing with my advocacy is being involved in the community in different ways.
Another issue is just mistrust in general. And I do want to point out that clinical research, as I mentioned it is a challenge. Even if the doctors and researchers are open to and trying to recruit people of color to be in these clinical trials, sometimes there's a struggle because people just don't trust it enough to participate. So that's why I try to encourage patients and educate them on what it means to be a part of clinical research so that we can get more representation.
Q: So you also work with Determi-Nation? What is that like?
A: Yes. Determi-Nation is a healthcare movement. It's by Janssen, and I work with patients, advocates, healthcare providers, and researchers, and we're committed to supporting more quality medical care for people of color. So we have been figuring out what the problem is and what solutions we can provide. And we do have a couple of solutions. With that, we just came out with a program that has medical students from SUNY Downstate serve as patient navigators. They help connect people of color with psoriatic disease to important resources. And then we also have a resource that was developed by our members called Beyond the Textbook, and that helps to educate healthcare providers on how psoriatic disease presents and people of color and how to navigate conversations with patients in a way that they can feel heard, that they connect, and that can build morale and trust between patients and healthcare professionals. We're looking forward to seeing the difference that makes.
Q: Ok, nice. With all this great information you guys are compiling and getting together, how do you get it out to people so that they have readily available access to like these resources?
A: Yes. You can go to our website and learn more about it. We utilize our own networks along with social media. We've been on a lot of different platforms. We just recently had an interview with Essence, which went really well. So there are a variety of ways that we are connecting this information with patients, researchers, and healthcare care providers that need it.
Q: And if there were people who also wanted to get involved, like volunteers, do you guys have a network or a way for people to do that? Or is that kind of not a thing yet, or what does that look like?
A: Yeah, all these resources that I mentioned, as well as additional information as to how you can get involved, is on the website too.
Q: With your journey of psoriasis and everything, what are some things that you learned along the way that help you personally, and then in a general sense, could help other people as like a foundation? Or maybe some skincare routines that help you out. If someone started here, how could they move forward trying to find personalized ways to help themselves specifically?
A: Well, connecting with a network of people who have this disease, who work to find solutions for these different issues that I mentioned, has helped me tremendously, and just advocating for myself in maintaining hope when I'm struggling with my psoriasis. Also, finding a doctor who understood my needs. And I've been with my doctor for the last seven years. I met her through the National Psoriasis Foundation, and she was the first doctor who helped me get a biologic that works for me in clearing my skin and helps me gain a better perspective on the quality of life. So, getting effective treatment was important in helping me with my journey. And then I would say just day to day, making sure that I'm moisturized, paying attention to my body, if there are any changes to identify maybe the medicine isn't working, getting ahead of that and being proactive opposed to letting it get out of control and then trying to find a solution.
I love bubble baths, so oatmeal baths or apple cider vinegar baths have different healing properties and can keep inflammation down. And then, when it comes to my mental and emotional health, which is severely impacted when you have a chronic illness, I have gotten into meditation. I made it a goal to meditate every day since last December. I make sure to focus on my mental and emotional health and learning tools to deal with any anxiety that comes up, even regarding my psoriasis. So those are kind of the things that I do for myself.
Q: How do you realize when you have a flare-up? Is it something you feel on the inside, or is it something visible all the time?
A: That's a great question. I know that I'm having a flare because my skin will get itchy. Even if there are no plaques present, it's almost like it's my body's warning to say it's coming. So then you start scratching that area, and you'll see that the skin is a lot drier than the other areas of your skin. You may even break skin just from the intensity of the scratching, trying to give yourself relief. So for me, that's when I know that I'm flaring, when there's itching, when I'm scratching a lot and when I see new patches of dry skin that have not turned into a plaque, but I know that they're on the way to do so.
Q: Are there any facial skin routines you do daily? If someone's dealing with it on their face?
A: The advice I would give if you have psoriasis on your face is not to use really hot water when you wash it. Hot water can be drying, so you want to use lukewarm water to even kind of cold. Make sure you use products on your face for sensitive or dry skin. Remember that harsh chemicals on your face that aren't suitable for skin conditions like psoriasis can worsen your condition. Use gentle cleaners and always follow up with a really good moisturizer that is oil-free, so it does not clog up your pores. My favorite kind of moisturizing oil to use is Moringa Oil. A lot of people have never heard of it before. I learned about it a couple of years ago, it is a great natural oil kind of moisturizer that can help you eliminate that inflammation and the dryness that comes with psoriasis patches. It can go on your skin and won't cause further issues with acne.
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Q: Would you say that kind of transfers to the types of soaps and lotions you use on your body?
A: It's the same with your body, getting gentle cleaners, finding cleansers formulated for psoriasis. There are things out there that you can use formulated to keep your skin healthy but also to cleanse and not make your symptoms any worse.
Q: As far as advocating for yourself when you're in the doctor's office, and if you're feeling like your diagnosis may not be correct, how would you advise someone to go about that?
A: So if someone out there feels like they have gotten the wrong diagnosis, I would ask them or tell them to reflect on why and then write that down and present it to their doctor. Do you think you got the wrong diagnosis because the treatments aren't working? Do you think you got the wrong diagnosis because your symptoms don't match what you found online? Create a list of reasons why you feel that way and then present that to your doctor.
If they aren't listening to you, it's probably time to get another doctor. And if you're having trouble finding a doctor, the National Psoriasis Foundation has a patient navigation center that can connect people with dermatologists specifically who treat psoriasis.
Q: So you did mention in your family, your cousin, his psoriasis was worse when he was younger than as he got older. Do you maybe know why that is or maybe guess why that is?
A: Everyone's body is different. Everybody's immune system is triggered differently. It could have been environmental factors for him. It could be a difference in diet. That's what makes psoriasis so tricky because there's no test to pinpoint what exactly is causing your psoriasis. It's almost like a trial-and-error thing where you just have to try stuff and see what happens. So that's what's so frustrating with this disease.
Q: Is there anything else you feel you wanted to talk about that I didn't ask a question about, or just anything else you would like to add?
A: The mental health component of having this disease. For me, that was almost as much of a struggle as the physical components of having psoriasis. You know, it impacts your quality of life; it impacts your willingness to do certain activities to be around certain people because you're always afraid of being judged due to the stigma that comes with having visible conditions such as being contagious or people's views on beauty and what that means for the skin. It can be very isolating and impact your self-esteem and self-love. Sometimes when people are not educated about psoriasis, they say, oh, it's just a cosmetic issue, but it is not a cosmetic issue. It's an immune disease that affects the skin, and under those circumstances, your mental health is impacted because of the hormones and all that's released due to it being an autoimmune disease. So I want to reiterate that this is more than skin deep; it really impacts your entire life.
I also want to recap that two new solutions are available from Determi-Nation, a health movement led by diverse patients, healthcare providers (HCPs) and advocates, and Janssen Immunology to address the gaps in care that Black, Hispanic, Asian and other people of color with plaque psoriasis (PsO) and psoriatic arthritis (PsA) face.
- A new resource, Beyond the Textbook: Psoriatic Disease in People of Color, can help HCPs understand how psoriatic disease presents in people of color and how to navigate patient conversations in a culturally inclusive way
- A new patient navigation program in partnership with SUNY Downstate Health Sciences University focuses on care coordination. Navigators are responsible for checking in with patients following missed appointments, reminding them to pick up prescription medications, and providing educational materials, such as information in multiple languages.
These gaps can seriously affect health outcomes, mental health, and overall quality of life.
- Only one-third of patients living with both PsO and PsA are co-managed by a rheumatologist and a dermatologist.
- People of color experience poorer quality care coordination than white patients. A study found that those who identified as Black, Hispanic or Asian/Pacific Islander experienced greater difficulty getting timely follow-up on test results and received less help in care management.
- Medical education around culturally inclusive care is limited – of rheumatology fellowships surveyed, 30% provided no training in cultural competency or health literacy, and in dermatology, 75% of residency programs provided no lectures on the skin of color.