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.