Are you supported by your medical provider? Dr. Patrice Little DNP, FNP-BC, who serves on ITSAN’s Medical Advisory Board and Briana Banos, the creator of Preventable discuss meaningful steps a TSW patient and medical provider can take towards a positive partnership. Learn tips for how TSW patients can advocate for their health needs and how medical providers can validate and support the physical and mental health needs of their patients.
Dr. Little and Briana united for a LIVE in celebration of World Atopic Eczema Day 2021, and the following interview shares excerpts from their conversation. Many within the TSW community started off with eczema and developed TSW Syndrome after using topical steroids to treat their eczema. The more we can raise awareness within the eczema community, the more we can unite and problem solve together so that TSW Syndrome can be prevented.
Briana: What do you see as good communication between a physician and a patient?
Dr. Little: It should be a form of a partnership. One of the things that we encourage is for the patient, also known as the actual healthcare consumer, to be informed. We encourage them to be informed and be involved in the decision making of their care. So we want that – and then the role of the provider, whether it’s an MD, a PA or a nurse practitioner, our role is to make sure that we educate you properly of all the different options that are out there to help you make the decision…it’s really a partnership. We’re in this together when it comes to keeping individuals healthy.
Sharing Medical Literature
Briana: If a patient came into your office and they had any kind of literature on this (TSW Syndrome) what would be your response to that?
Dr. Little: …Preferably if you could tell it to us in advance, before the visit so we could prepare, that helps…We want to hear what you have to say. Is it from a credible source?…You have the American College of Allergy, Asthma and Immunology…the American Academy of Family Physicians, many of those governing bodies…And then when we come to our challenges, we refer you out to a specialist. So more than likely if I felt like I could no longer continue to provide the care for your needs for eczema, I would refer you to a dermatologist
…I do not want to deter you or make it complicated for you, where you’re just like, “Oh is this a credible source? If it’s not, they’re going to dismiss me.” No, if you find something out there that intrigues you we’ll clarify that, that’s our job, because we went through the training, we know what’s out there and we’re able to let you know.
Your First Appointment
Briana: What are some essential things in that first go to appointment that would really help you help your patient?
Dr. Little: I always like to start with telling my patients to always have a notebook to keep everything together and in preparation for the visit to write some of those key questions they want to have addressed by the end of the visit…We want to know when did these symptoms start? And then for your family history, does anyone else in your family have eczema? And…not just eczema but also asthma because it’s connected. Or history of allergies?
…Were you treated before? What were you treated with? And did it ever resolve with the treatment that they prescribed? Because oftentimes people say, yes I’ve taken the treatment before and no, it didn’t work or it got worse, or they had to do something else.
And then we also want to know, did you have any complications with that?…If you had issues with breaking down of the skin more than likely you could have had a bacterial infection in the past. Let us know if you’ve ever had that as a result of your eczema that was really bad and what antibiotic did you take and how long did you take it for?
…I say that because Briana knows all too well with her story, her amazing documentary, how most of the time, you’re having to educate providers about your health condition. It’s your body and that’s why we encourage you to be a partaker in your visit.
Briana: …When it comes to eczema it is not always just the skin and so when it comes to dermatologists, I know a lot of us, especially with TSW are looking for these huge, not sweeping answers, but for doctors to be super compassionate and understanding and in a dermatologist’s office are they kind of just looking for a band-aid over the fire that’s just happening or are they looking for the core of what is wrong with us? What should we expect going into a dermatologist’s office?
Dr. Little: Ok so what you should expect during a visit, after of course they review all the information we discussed with the history, the present history of it, and then your family history and past treatment – the next thing is of course they should be assessing you. They should be looking at your skin doing some observation, not just for that one spot but just to see if there’s any other spots where you have eczema. And then also sometimes touching the skin, kind of palpating which is gently touching, seeing is there any tenderness or soreness to that? It’s not just you seeing the redness or feeling the changes in the skin as far as the texture…not just that alone…with the skin there’s some individuals, their skin is so sensitive and the barrier is broken down when they’ve used topical steroids for quite some time.
That is how the visit should go. The provider should at least be looking at your skin, not just in that one spot but also ask you were there any other spots that were affected? Because sometimes you have it in the folds of…your arms and then behind the legs…most providers, they understand that the care is individualized, that patient A will not present exactly like patient B. We have to emphasize the fact that because we have different complexions, it will look different colors. If you’re a more darker complexion it can look almost as – and when I say darker complexion I mean a darker, deeper, nice chocolate with the skin tone. It can look black and if you’re very, very fair it can look red. There’s variations and even in my complexion it can still turn out red when it’s irritated. So it’s variation, you have to be aware of the variation and how it could show up.
And it’s unfortunate, there are some providers out there that are not fully aware too as far as how it (TSW) presents in different patients as far as with the diversity. And once again that is something where – why we have our platform with ITSAN, making sure that you’re properly educated and encouraging you to advocate for yourself by letting that provider know. But above all, if you don’t feel like you’re getting the right care, it’s ok for you to go to someone else. Never feel like you have to have this type of loyalty to a provider who’s not meeting your needs. At the end of the day, it’s about you having your needs met so you can be healthy and live the best life possible. Because the only way you could really live your best life and go about doing your daily activities such as work and hanging out with your family and friends, is if you get the right treatment, because other than that there’s a lot of mental health conditions that are associated with having eczema.
Most people think that eczema is something very small, like a little rash, but there’s variations of it and a lot of providers do not understand the variations of it. And so if you see that you’re experiencing this and you see that it’s a power struggle while you’re at the visit, more than likely ask for another provider in the group or just go to another facility. There are providers everywhere. And you know I say that, but I also have to be cautious of the fact that with some individuals, depending on which community they may not have the access to care to the provider that they need.
…You can also contact your insurance company and ask for a review. Hey, I’ve received this treatment, it’s not working…can they escalate my concern? Can we have one of the physicians under their insurance company review it? And many people don’t understand that they have physicians, all different types of specialties, that work as consultants for UnitedHealth Group, Cigna, Blue Cross Blue Shield, Aetna, you name it and there are nurse advocates that are there because of that, because oftentimes, if a treatment is not working, it’s not working. And you know that if you do the same thing over and over and get the same results, that’s called insanity and we don’t want that for you.
Mental Health Support
Briana: …If any of you guys know or have a practitioner that you really love and care about, please share them. Tell ITSAN. They would love to have that info…I know one of the things you touched on Dr. Little is about that piece in the skin realm that has to do with our mind. That you know a lot of people with eczema, it’s not just a little rashy skin condition, you know I deal with anxiety. There are people that deal with lots of depression. These types of conversations don’t tend to happen a lot. So I don’t know if you have any helpful tips or resources when it comes to having a patient that is dealing with anxiety or depression?
Dr. Little: …Let’s first acknowledge…that it’s possible to have depression and anxiety, so you’re not alone. That’s the first thing that we want to do, is to acknowledge that you’re not alone, that other individuals deal with that too because of just the whole social aspect. They may not feel as comfortable showing their skin, going to a beach or some type of activity, putting on a dress and so forth, or with intimacy. So there are various reasons as far as anxiety and depression and how that can come about. The depression could come about in the fact that they’ve tried and tried so many treatments and it has not been resolved. And at this point in time because of the different medications that are out there, I really feel like it should never get to the point where you’re not getting the treatment that you need.
There’s different things now, we do not have to just stick with a topical steroid. Not unless you are allergic to the other treatment options, so it should not get to that point where you’re not getting your needs addressed. But also be mindful that when it comes to care, it’s always holistic. I did not mention earlier, but I will mention now that the number one question that should be asked during the visit is really how the patient is coping with it? And providers should take an interest with that and if they don’t just bring it up and say…because remember it’s how you start off the conversation, “I really would like to feel better when I go to work and I wear…” like if you have a job where you wear a particular outfit and it exposes a part…where the eczema looks really bad and you’re asked questions like, “What’s that? What’s going on with you?” and you feel like…their eyes are totally directed towards that area with the eczema, then let your provider know. Let them know that “this is really interfering with my self-esteem when I go to work. I feel like people are more focused on my eczema and not actually me, the individual who is there to provide a service.”
So that’s important. You can always go and talk to a psychiatrist or a psychologist or some type of therapy for this just to help you with processing things, if it’s something new. What are you processing is what you’re probably asking me? What you’re processing is that this is likely a lifelong condition that you may have to live with and how you have to make certain adjustments in your life and you’re not able to do things like everyone else when you go to the beach. Because…when you use topical steroids and I’m saying that a lot because that’s one of the beginnings of treatment – aside from telling people to stop using certain types of soaps and detergents – but when you do that it makes your skin very sensitive to the sun and that’s one of the things where now you’re exposed to something else.
So mental health is just as big a component when it comes to managing your eczema as it is for the actual physical aspect, the skin. So to be aware of that and it’s ok that you have those feelings. I really believe in embracing it. Not to judge yourself that you’re anxious or depressed. But moving forward and saying, “hey, Dr. Little said the other day that I need to own this and that there are support systems out there, there are support groups.” ITSAN does a great job. And people, individuals sharing their stories. Sometimes hearing other peoples’ stories or watching the Preventable documentary, what it does is it makes a connection. It resonates with you and you’re just like, ok if they were able to get through it, I’m able to get through it.
Now sometimes, you know when it comes to the support, like with family, because we have to talk about that as well, include them in that. Or your spouse or your partner, include them in those challenges that you’re going through. “I’m going through this and it’s really hard and I just need your support” and that helps. That way you really don’t feel like you’re on this journey alone, because you’re not.
Briana: You guys aren’t, you are not alone. I’m in the boat with you. I’m paddling right there, paddling next to you.
Patient and Provider Challenges
Briana: …Why do you think there is such a disconnect between derms and eczema patients? And I know you kind of touched on it a little in the beginning, but why do you feel that when it comes to there being such…a disconnect, a lack of communication there?
Dr. Little: I feel there’s various reasons and I’m just going to give some examples. I think some people treat medicine almost like it’s cookie cutter. We see it and it’s not. So that could be it…some have a more like a doctor of osteopathic medicine, they have more of a holistic approach to it. Some providers are like – just do this, do this, do that, see you in a few weeks or call me if it gets worse and so forth like that. So I really feel like it also depends on the provider. …Some may not be as open. And I know you may be like, that’s weird, because they’re in this profession and supposed to care, but we have to talk about those realities.
Things have actually changed a lot…there’s more of a push for the patient to partake in their visit, to be a partnership, for them to make informed decisions when it comes to their care. It’s one of those things where I really have to think about it a little bit more…as far as how bad it is and see what the research says…because of so many things that are in place such as like malpractice, I mean if you’re not getting the care and getting neglect, there’s different measures you can take. That’s not what I’m encouraging you, but usually if you are persistent and go back and as I mentioned, partake in that visit, they will take the next steps with you in making sure they find the right treatment for you or refer you out to a specialist. But usually I think the dermatologists do a good job.
…If it’s a 15 minute visit you want to make sure for that one problem that they’re addressing, you come with that notebook prepared with your questions. And the number one question is, by the end of this visit, what do I want to achieve?…Do you want to leave there with a new medication? Do you want to leave there with a better understanding about your eczema or if you have steroid withdrawal. It just depends on what stage you are in your treatment. So that’s really one of the things that I want to emphasize before we end today.
Briana: Awesome. And I know, I’ll steal something that Kathy (Tullos, ITSAN President) said in the documentary, sometimes physicians just don’t have curiosity…especially with TSW. You’re not curious as to why my hair is falling out right now? And you’re just calling it eczema and you just want to do a little biopsy test which is really not going to tell you much, other than that I have “eczema?” So I think that’s kind of an issue for some. Of course you Dr. Little, you’re here, you’re awesome, you’re doing amazing things – you’re helping so many people. You’re open. So I think that could be something of – sometimes physicians have lost that curiosity.
Dr. Little: …I don’t think it’s all. So you notice I try not to generalize…Kathy Tullos, she had mentioned that sometimes “it’s thought that we aren’t compliant to the treatment regimens when TSW happened due to closely following topical steroid treatment regimens.” And she’s absolutely right, because most of the time people are not as educated. Remember as I was mentioning, there’s Continuing Education.
Screening Your New Physician
Dr. Little: …I didn’t mention it earlier, be ok when you call and schedule the first time, if it’s a new visit and say, “Is this doctor or nurse practitioner or PA – are they familiar with Topical Steroid Withdrawal? I want to know that before I come into this visit.
Briana: That’s a great question, right off the bat.
Dr. Little: Let them know, I’m telling you, because it will get to us…they will give us the message and we will in turn be like, do I know this? Do I not know this? And then let our team know, you know, no this is not my area or specialty and probably refer them to someone else that we know. We have our own network. And we know what we’re capable of doing. I tell people, if I can’t do or treat a condition I will tell you very quickly, this is not something I’m comfortable with. I’m not comfortable with it but I’ll find someone who’s good at it or have someone go as far as call the insurance company, and ask them. And they have a list of providers usually that will know that – it doesn’t have it listed that they know about TSW – but they have a list of providers they can refer to you.
Briana: …Even if someone is not well educated on it, we’re still looking for someone who is at least empathetic, open to it, because we need a physician. At the end all, be all we need someone even if they’re not super educated on it. If we have a bacterial infection, if we have eczema herpeticum, if we have certain things that need a physician or a doctor. Antibiotics. We need someone to go to, so even if someone is not well versed in TSW, it’s still a support to have a doctor there that’s willing to go on the journey with us and learn with us as we go along.
Dr. Little: Yes. Because it is a journey, you said that so well.
Briana: It’s definitely a journey guys. It’s a Jumanji journey, that’s how I feel about it sometimes. But thank you so much Dr. Little. You guys, we’ve run out of time. I love you ITSAN. You know thank you Kathy, thank you everyone that’s joined, you know for letting me hijack the ITSAN page. But we really just wanted to provide this Atopic Eczema Day…some help and some guidance to you all, cause we love you. I love you!
Dr. Little: We love you and thank you!
Briana: Hopefully we will see you guys around. Check out the ITSAN website guys if you haven’t already – like and subscribe…to ITSAN. Go – go there now…because they’ve got big things coming up. Really big things. So thank you guys and I hope you have a fabulous day or night, wherever you are.
Watch Briana and Dr. Little’s full interview here.