Psound Bytes™ Podcast: My Psoriasis Diagnosis Changed My Life

Shiva: My name is Shiva Mozaffarian and joining me today on Psound Bytes™ are two amazing volunteers and medical students, Melissa Leeolou and Max Green. We’re here to discuss their stories, why they chose to pursue a career in medicine, and how they came to volunteer with the National Psoriasis Foundation. Through our discussions we hope you too may discover how you can be a part of NPF’s mission and volunteer. Welcome Melissa and Max! It's such a pleasure having you here today. So, I’ve had the honor of working with both of you. For our listeners, let's first learn more about you. You've both been diagnosed with psoriasis. Can you please tell us when you were first diagnosed and how did that diagnosis change your life? Melissa, can we start with you.

Melissa: I was diagnosed with psoriasis as a baby and by the time I was three years old psoriasis actually covered me from head to toe. The severity of my condition really changed the way I interacted with the world, and I often felt deeply stigmatized by my appearance. At that time very few treatments existed, so my condition was not able to be well managed and it felt truly devastating. So I think for me, growing up with psoriasis was in part about discovering and differentiating how the diagnosis didn't define me as a person. But at the same time, it really impacted me, and it put me on a path that certainly shaped the person I am today.

Shiva: Thank you, Melissa. And Max, how about you? Can you share with us your diagnosis story?

Max: Yeah, of course. So my story was a bit interesting as well in that I have a type of psoriasis known as guttate psoriasis. So it kind of presents a little bit differently than plaque psoriasis does. I actually had this type of psoriasis as a teenager, but because it would come and go, I kind of ignored it and just lived with it for a very long time. But about six years ago this guttate psoriasis came back worse than ever and it really would pop up and kind of cover me from head to toe as well. So that's when I began seeking out a dermatologist for it. And honestly, at first my presentation was a little bit odd, so it took a few dermatologists to honestly get me on the right treatment regimen and get me on topicals. So I remember living in Los Angeles at the time and being so self-conscious when I had bad breakouts. I remember avoiding spending time with friends and would cancel last-minute things like beach trips because I felt so horrible with myself and it really did just a horrible number on my self-esteem. And although the topicals did help, it was really difficult to keep up with this sort of treatment regimen because I would break out from head to toe and so it really wasn't that manageable, and it didn't keep it under as much control as I wanted to. So I finally was able to reach out to a dermatologist and eventually got on the proper treatment regimen.

Shiva: And Max, how difficult was it for you to find the right treatment for your psoriasis? Previously you mentioned growing up, you always had skin issues. So I’d like to hear more about it.

Max: Yeah, definitely. So my teenage years I struggled with severe acne and eczema. And now, retrospectively I realized that I was dealing with guttate psoriasis as well. And anyone with the skin condition knows how much it can affect your self-esteem. I remember how each of these skin conditions changed how I lived my life. I look back at a time when I was trying treatments that didn't work. And I remember how hopeless I was that I would never get my psoriasis under control. It was a really difficult time. I was using topicals and not seeing the results I really wanted. I would let a dermatologist know that I was struggling with the treatments, and some would be really supportive, and others would just say it's going to take time and it was really frustrating. When I finally did find the right dermatologist, they worked with me and showed that empathy for my situation. That really changed everything. It made all the difference and I finally had faith that I could find something that was gonna work. I was very lucky in that after about six months of topicals, I found a dermatologist who switched me to Otezla and my insurance did cover it right away. And I know that I'm very lucky for that. And a lot of people have to deal with step therapy and other issues getting their therapy covered. So once I was on Otezla, I was very lucky in that I did not have a single side effect and within about two months, my psoriasis was fairly well controlled. It's been well controlled for a few years at this point.

Shiva: So glad that you found the right treatment and that your disease is under control. Thanks, Max!

Max: Yes, definitely. Feel very lucky.

Shiva: And Melissa, you were also diagnosed with psoriatic arthritis as a young adult. How did that diagnosis impact your life?

Melissa: Being diagnosed with psoriatic arthritis really reinforced what I had always known to be true. That is psoriasis is not just a cosmetic problem, but it's a potentially serious and a chronic medical condition and it was impacting my health in a multitude of ways. To be young and have joint problems felt extremely striking. As I learned more about psoriatic arthritis, I also developed concerns about how my disease would progress throughout my lifetime. And so I began pursuing new treatment options, most of which had not been available to me as a child with psoriasis. So throughout this process, I came to really value and appreciate all of the research and innovation that had taken place throughout my lifetime. Because suddenly new biologics had been developed that I knew were really helping people for the first time. And so in addition to starting medication, through this experience, in spite of the fear and the pain I felt, I also developed intellectual curiosities about psoriasis and immunity. I went back to school to study science and soon after I joined a research team at a major hospital in the Department of Pediatrics. I had actually developed this hope, this idea that I could be a part of efforts to alleviate for others some of the pain that I had gone through. And so my diagnosis changed my life, not just in relation to my health, but in some ways more importantly it changed my career, and it was part of my path into the field of medicine.

Shiva: OK, so you mentioned biologics. What other types of treatments have you tried over the years?

Melissa: Well, like many patients, I have tried it all -- from diets and cleanses to herbal remedies, teas, and acupuncture. There's always been a very low threshold for me to try something new if there was ever a small chance it could help. So growing up I used topical therapies just like Max, both prescription and over-the-counter. But those provided very minimal benefit for me just because of the vast surface area of my body that was affected. By the time I was in high school I was being treated with phototherapy which required that I leave school during lunch, three days a week, go to the doctor's office midday, and then return to school. So that was really time-consuming and challenging to keep up with, especially as a teenager. And then about a year in the treatment stopped working altogether. As I briefly mentioned earlier, eventually as a young adult, I tried different biologic medications. Not all were effective for me, but I currently take one that is helping a lot. I've been fortunate to have almost complete symptom remission for almost 10 years now which honestly feels like a miracle to me. But I should add that I still continue to take a very broad approach to my health. While diet isn't a treatment for my symptoms, I still do my best to take care of myself as much as I can with the hope that reducing inflammation from lifestyle changes like diet and exercise can supplement and support my medical treatments.

Shiva: So Max, I know you mentioned that you didn’t have trouble with access to your biologic treatment and it’s always great to hear that. Melissa, what was your experience with this? Was it a struggle to obtain the treatment that you needed?

Melissa: Yes, I've experienced a number of challenges in terms of obtaining treatments and it actually continues to be problematic for me. Even though I'm currently symptom-free and I feel amazing on my medication, there's always the possibility that my insurance company may decline coverage and I know that if that were to happen, then my severe psoriasis would return and again be debilitating, and this really concerns me. The National Psoriasis Foundation has a dedicated advocacy team led by government relations experts, in order to address access to care barriers. The advocacy team works alongside the medical board plus patient volunteers. So I've been really fortunate to be a part of these efforts for policy changes for the past few years.

Shiva: Max, Melissa, thank you both for sharing your stories with us - how you’ve gone through changes in treating your psoriasis Max and Melissa, your psoriatic arthritis. So how has your experience influenced your career choices? You're both medical students now, why did you choose to become a physician? Max, let's start with you.

Max: So I strongly believe that living with a chronic condition like psoriasis, it allows you to access a unique sort of empathy for others who are experiencing something similar. So I always knew that I wanted to get into medicine since early on in my teenage years. But I wanted to keep my mind open about what I would end up in specifically. Throughout my time in medical school, my experiences it kind of only showed me how much I really loved dermatology. To me, it's such a unique field, and it really allows you to help people gain their confidence back and take on the world as their best self, and I feel very lucky to be in a position where I hopefully get to pursue this career. I want to be a dermatologist to help people, reassure them that I will work tirelessly to find treatments that work best for them, because I know that if I had that growing up, it really would have made all the difference.

Shiva: And Melissa, how about you?

Melissa: Well, unlike Max, pursuing medical school was not really a linear path for me. But by the time I was committed to a career in medicine, it was because I wanted to continue engaging with patients and helping them through life's challenges, with both genuine emotional support but also with innovative medical treatments. Throughout my own journey, I had come to really see healing as this process. First, it was the investigation of diseases and disease pathology through research. Then there was the importance of policymakers and patient access to treatments, and lastly, how a creative and holistic approach to care could really complement academic science. And for me, those were all components that I wanted to engage in, in some form, and had been committed to for a long time.

Shiva: It’s so awesome to hear your paths to medicine. I’m so glad you shared that with us. So, Melissa, you’ve been volunteering with the National Psoriasis Foundation for a number of years in a variety of ways. How did you first come to volunteer with the NPF and what types of activities have you participated in?

Melissa: I first joined the NPF when I was maybe 14 or 15 years old. I attended what was back then a walk for awareness, and in those days we hadn't fully developed a youth program to the extent that we have now. So I popped in and out for a few years before really coming to the community as a young adult in search of treatments and feeling a bit lost in that process. So I started out as a Community Ambassador, volunteering in broad public engagement and fundraising. And we still have so many fun events happening all over the country each year. Soon after that, I became a social ambassador where I helped in our educational efforts through online platforms. I really loved connecting with people online and talking about our shared experiences. So, I was then trained as a mentor for the One to One program to offer support through emotional solidarity. I also joined the Youth Services Committee, where we're dedicated to creating new resources for children with psoriatic disease, as well as resources for their parents and families. And lastly, I've spent a number of years working with the NPF Advocacy team, traveling to DC annually, and speaking with lawmakers about patient experiences, increasing research funding, patient protective legislature, and ultimately, how we can reform policies that are sometimes harmful to chronic disease patients.

Shiva: Thank you, Melissa. You know I’ve had the pleasure to work with both you and Max but even I didn’t know how much you’re involved with NPF activities so I’m glad I asked. It’s so great to hear and I know I always tell you this, but we really are honored to have you as a volunteer, so thank you from the bottom of my heart. Max, you also volunteer with the National Psoriasis Foundation and you’re actually one of the first medical student volunteers that worked on the ongoing podcast project that I manage. When did you first decide to become a volunteer with us and why?

Max: I originally stumbled upon NPF right before the pandemic and a few years before that as I was trying to find resources to connect with other people who are living with the disease. The pandemic hit and my ideas of getting involved were tabled for a bit. I finally reached out about two years back, and it has been just an awesome experience since. I've done a lot of work on Psound Bytes™ and writing questions for interviewers to ask. Additionally, I've worked with the advocacy team to continue advocating for NPF’S mission. I met and spoke with Congressman Steve Scalise's office and will continue work as an advocate moving forward, hopefully, to continue to improve policies surrounding NPF's goals. So, I just recently finished training and just like Melissa, I'm going to become a One to One mentor. It's such an incredible opportunity to connect with others in the community and kind of talk about the experiences we've had. Things that worked, things that haven't worked, and really just like I said, create a sense of community which I believe every single one of us who volunteers with NPF and works with NPF, that's our ultimate goal.

Shiva: Absolutely. So Melissa, as Max mentioned you are also a One to One mentor. How important is it for patients with psoriasis or psoriatic arthritis to have the opportunity to connect with others who understand what they may be experiencing?

Melissa: It is just so important. In some regard, the One to One program is about all of the healing that doesn't take place in a doctor's office, including the emotional toll of psoriasis, as well as coping with all of the ways psoriasis infiltrates your life. These are things that are not taught to physicians in medical school, but instead, they come from lived experiences and they're very important to talk about. I've personally found that there is so much to gain from support through emotional solidarity, and I've learned so much from other mentors, including how to laugh through some of these challenges. And I'm more empowered to do that because I know I'm not in this alone. In fact, having a community of people who can understand these unique challenges, and this very personal aspect of your life is a real game changer for many people, myself included. Growing up with psoriasis, I used to think, I know there are millions of Americans living with psoriasis but where are they? Because I just felt so alone in my disease experience, and I really longed to meet others. So now I'm really grateful to be able to contribute to these efforts and I'm even more fortunate to remain friends with many of the people I've mentored as well.

Shiva: Such an amazing tribute, thank you, Melissa! And Max, you mentioned you recently joined the One to One program as a mentor as well. Do you also feel there's an emotional component to having psoriasis and given your background do you feel that helps you be more compassionate towards patients you work with?

Max: Definitely. I one hundred percent agree with that, there's a huge emotional component to it. I really believe that until you know how it feels to have a condition that really affects your confidence or ability to live your life, it's hard for you to truly say that you understand someone and what they're feeling. But also, I think it's important to know that not everyone's journey with psoriasis is the same. So, something I'm really excited about with the One to One mentor is really learning how other people experience psoriasis and understanding that it's very different for everyone. And this will help me become a better provider moving forward. So I think it's really just about, like I said, going back to that idea of community and sharing experiences and just having someone to talk to about it all because it's like as Melissa was saying, it's a really personal part of your life that very few people can truly say they understand unless they live with psoriasis themselves. So, I'm really excited for it and just being that shoulder to lean on and be that ear to listen to whatever someone's going through is just a really awesome experience.

Shiva: Thanks Max, I mean I think you both highlighted this but it’s such an important program so really glad you decided to come back and be a mentor! I appreciate you both and your hard work across all NPF programs. So for both of you, what would you say is the most important aspect of your work with the National Psoriasis Foundation?

Max: So, for me, it kind of goes back to what we've been talking about, connection and support hands down are just the most incredible part of it all. There truly is a sense with everyone you work with at NPF that we're kind of all in it together and it's really special. I mean, it's something that you just feel supported from the moment you step on either as a volunteer or in whatever capacity you're kind of joining NPF as.

Melissa: Yeah, I totally agree with Max. The community is just so special, and I don't think I could just pick one most important aspect of the work. One of the really great things about the NPF is that there are several facets to the overall agenda of helping patients. And so there are many ways that volunteering can impact patient care, and it's easy to pursue different interests within the NPF. As a patient, I do think I've benefited the most from the One to One Program and developing those personal connections. But then as a future provider, I'm also very passionate about advocacy and I hope to engage even more with the NPF advocacy team as my career progresses. I think there's a significant need for providers to work with legislators to create new systems in order to enable patients to have better access to care. So, I look forward to working more on this, but it's just there are so many opportunities for everyone, and that's what is so exciting about the NPF.

Shiva: So, Melissa and Max, I know we’ve talked about a bunch of examples already of how medical students or health care professionals can be involved with NPF’s mission. Do you have any other examples of how providers can volunteer with the NPF that we haven’t mentioned so far on this podcast?

Melissa: Absolutely. We've definitely talked about some of the ways to help and get involved. I think as providers we see patients in order to make a diagnosis and treat the disease. But for me, the real joy is knowing that by helping people with their disease, they will hopefully feel like life is more freeing and fulfilling. So being a part of the NPF is a really beautiful way to complement medicine because you get that connection with patients and hear about both the ways in which psoriasis impacts patients, but also how the treatments can change experience altogether. Having that strong patient-provider relationship really maximizes the potential outcomes for everyone involved in a really positive way. And so we would love to have providers join us in all facets of our volunteer work, whether that's community events, advocacy, education or even all of the above. Provider engagement with the NPF can really change patients’ lives and also providers can expand their capacity for understanding and knowing about patients beyond their disease.

Max: I totally agree with everything that Melissa just said. I think it's such an incredible way for providers to connect with patients in a very different way and people in the community. There's so many different ways to get involved and I really think it's what you make of it. During times that you're busier and the practice might be more intense or you might have more responsibility, you can kind of make of it what you want. You can volunteer at more events when you have more time. And so I think it's an incredible opportunity to get involved in. There's so many diverse ways to give back through things like the podcast that we're talking on now, through local NPF walks, through continuing medical education events, through One to One mentoring (if they're a provider that's living with psoriasis). There's even clinical trial panels and advocacy I think at both state and federal level is incredible. So I just think there's so many ways to give back and there really is an opportunity for every type of provider and individual at many different levels, whether it's someone who's just starting off medical school, if it's a resident, if it's someone who's been practicing dermatology or rheumatology for 40 years. So I think that's what's so awesome about it all.

Shiva: I’m so glad that you mentioned that Max, because we were creating the medical student volunteer group, we really wanted to acknowledge the time commitment you already have and create a space where busy medical students could get involved. So, you both have been very active members of this medical student volunteer program and I wondered if you can talk to listeners a little bit about it. What do you typically do and what are some of the highlights of this program for you?

Max: I can definitely talk to that. I think as I've mentioned a lot of the program is really what you make of it. You'll receive emails about different ways to get involved through local events, advocacy, working on the podcast, whatever it may be. There's just a million different ways to get involved and I think what's really important to emphasize is everyone who I've worked with at NPF understands that medical school is busy. Anyone who's in medical school knows that there's times when you can barely find sleep at night. But it's amazing cause this opportunity allows you to take on more when you can and allows you to step away when you need to. So I really encourage anyone who may be interested in getting involved to reach out. They'll work with you to make sure that you can give back when you have the capacity. So I think that's really important. I'm sure Melissa has had a similar experience.

Shiva: So we’re coming up to time but before you go, I know this is early in your career, but I wanted to know have you identified your clinical interests yet? What do you envision your future will be? Max, let's start with you.

Max: So I'm sure as many listeners know, dermatology is a bit of a brutal field to get into today. So I'm ready to take it on and I'll be applying for residency positions this upcoming fall, which I'm very excited about. And my goal is at this point just to find a program that is a good fit for me. I really want to find a program that works with diverse communities but also understands the importance of research to continue to improve care for patients. So although early in kind of the process, I hope with my future career to have a great balance between clinical responsibilities, working with patients, and I also love academics because I've always had a passion for teaching. So I'd like to work in academic dermatology moving forward.

Melissa: I’m not applying for residency just yet, and while my experience with psoriasis led me to medical school, I've really been taking the time to explore all fields of medicine. It feels like such a privilege to be a part of people's lives, whether that's sharing in the joy of a new mother, giving birth, or stitching up the child who fell off the swing set, or meeting people who are seeking treatment for their skin conditions. So far, I've especially loved pediatrics and dermatology because I often think about my own experiences, and I just, I can't help but feel a really deep compassion, almost like that type of job is a vocation for me. So my research is currently focused on autoimmune disease. And as a clinician, I'll hopefully be able to combine all these interests either through pediatric dermatology or autoimmune dermatology. But I definitely look forward to seeing how it unfolds in the coming years and I can't wait to follow Max's career as well.

Shiva: You both have such incredible plans for the future! I’m so inspired! We'll look forward to seeing how you progress, and I know I’ve told you both this but I can ‘t wait to watch you change the world. Max, Melissa, thank you so much for being here with us today, and on behalf of the NPF, we're so grateful for your support and continued engagement in our mission. Do you have any final comments you'd like to share with our provider audience?

Melissa: It's been so fun to talk about all the great work that the NPF does. I think the NPF is a truly fantastic community. The volunteers are really just such an important part of the NPF. Really just kind of the heart and soul. They hold such a deep gratitude for and there's so much more work that we hope to accomplish together. So I'd encourage listeners to come join us and we'd love to hear from you.

Max: I just encourage anyone who may be interested in getting involved with NPF to reach out, because I guarantee there's some way they can get involved that can make a difference. There's so many different skill sets that are needed and it's just an awesome experience to get involved. So I highly encourage anyone to reach out and for any providers out there, I wanna say as a patient, thanks for all you do coming from a place of empathy and working with the patients through a sense of teamwork to find a treatment that works for them. It really makes all the difference, and you are changing people's lives with psoriasis. So keep what you're doing and hopefully get involved with NPF. And hopefully, Melissa and I will work with you moving forward.

Melissa: We love our volunteers.

Shiva: Max and Melissa, you are both so inspiring with amazing plans for the future. Thank you for sharing your words of wisdom from the perspective of someone who has psoriatic disease and for all you do to help NPF accomplish its mission and for the community. We’re so grateful for all you do to guide and help others both now and in the future. I’m personally honored for the opportunity to work with the both of you and watch you grow. For our listeners, April 16-22 the National Psoriasis Foundation is honoring our outstanding volunteers such as Melissa and Max through National Volunteer Appreciation Week. We honor and thank the many health care providers who give their time and talents to mentor, raise awareness and funds, advocate for policy change, sit on advisory committees, or are Medical Board Members serving to drive recommendations and scientific discoveries. If you would like to join NPF’s efforts please visit psoriasis.org/volunteer. And finally thank you to our sponsors who provided support on behalf of this Psound Bytes™ episode through unrestricted educational grants from Bristol Myers Squibb, Janssen, and UCB.

My Psoriasis Diagnosis Changed My Life

Psound Bytes™ Transcript: Episode 192

Release date: April 20, 2023

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