Kaleigh: My name is Kaleigh Welch, and today I'd like to welcome Sophia and Jackie for discussion about living with psoriasis as a child, being diagnosed with psoriatic arthritis later, making the decision to treat with a biologic, and what feelings can be associated with making that choice. I was diagnosed with psoriasis at 18 months and so I lived in my whole life with this disease, and I've experienced numerous treatment choices along the way and different comorbidities. Sophia is currently in high school and is a figure skater who was diagnosed at age 7 with psoriasis and psoriatic arthritis at age 14. She is now on a biologic and has tried a few different treatment options. Jackie also had psoriasis as a baby and is Sophia's youth ambassador mentor. Jackie is pursuing a bachelor's degree in Wildlife Conservation and Management, plans to go to Graduate School to study conservation ecology. Jackie has gone through many treatment options as well, including biologics and is an avid advocate for youth struggling with PsA and related comorbidities. I'm excited to talk with Sophia and Jackie to hear their perspectives and how they resolve their issues about treatment choices. Welcome, Sophia and Jackie. While we met prior to today, I'd like to help our audience learn a bit more about you. When were you first diagnosed with psoriasis and psoriatic arthritis, and how did you feel about the diagnosis at that time? Sophia let's start with you. 

Sophia: I was first diagnosed with psoriasis at age 7 at the doctor's office. It wasn't really anything special and I only had it on my elbows and knees, and then later it became more. I was diagnosed with psoriatic arthritis at age 14 and I was very nervous. But also relieved because I'd been having a significant amount of pain that was untreatable since I was not with the diagnosis. And then once I got diagnosed, it was helpful for me because I was able to get the help that I needed. 

Kaleigh: Sophia, did you hear any comments from classmates about having psoriasis? How did you respond? You said that you only really had it on your elbow. So did you experience any of that growing up?

Sophia: Yeah, I did. There was sometimes when it would be on my face or other joints. Now it's mostly on my hands, but sixth grade, I think it was, I had some on my eyelids and under my chin. And I had this one girl in my class and she was like “ew” is that contagious? And I said no. So it was a little bit hard to deal with it at the time, but there was a part of me that was kind of like unaffected too, because I was like she's just uneducated and it's not about me. So, that was good.

Kaleigh: Yeah. I think anyone with psoriasis has experienced that at least a little bit. I know that since I've had it very severe since I was 18 months and since I have guttate psoriasis, which it shows up in spots, a lot of times people go, “is that chicken pox?” But for me, honestly, I'd get more weird comments or questions from adults rather than like kids my age. I don't know what it was, but I guess out of concern they thought to ask me things in a rude way. Who knows? And so how about you, Jackie?

Jackie: Yeah. So I was pretty much born with psoriasis. It was on my feet, my elbows and my fingers. A lot of close family members also have it, so it is genetic. I did start struggling with joint pain and other issues associated with psoriatic arthritis about 2 1/2 years ago. Just like Sophia said, it was a big relief to finally sound like heard, and I'm very lucky to have an amazing doctor. It was very scary and disheartening, though I wasn't super young, so I was aware of what that meant and that I would have to start slowly disassociating with some of my athletic affiliations. But yeah, I also was on swim team and so I did get a lot of comments about my skin and it did bother me a lot more when I was younger. Though at this point I don't really care much at all and I'm a lot more confident in my skin. Like Sophia said, people that are rude and make comments like that are just uneducated and I'm a big advocate for being confident while dealing with these issues.

Kaleigh: Thank you so much for sharing that. I think like you've both said, as you've gotten older there is more of having to grapple with your diagnosis and what that means for you. I think there also comes a maturity and Sophia, like you said, just understanding, OK, maybe they're going about it the wrong way, but they don't know what’s going on. And so it's not personal and just being able to use it as an opportunity and say, “well no, this isn’t contagious, it's psoriasis, it's a lifelong”, and using the opportunity to educate rather than take that personally, which is hard to do. So I don't have psoriatic arthritis, but I did get Crohn's disease in about second grade and I also have experienced what you both have-- of that fear and then the relief that comes with finally receiving a diagnosis and this is what all these symptoms are from and now we can treat it. But still the fear and recognizing this is a lifelong thing. So thank you both for providing insights on how to handle questions about your disease. So let's now turn to your treatment journey. Sophia, what treatments have you tried for your psoriasis and what did you notice was the most effective in clearing your skin?

Sophia: For my psoriasis in particular, I had used a whole bunch of topical creams like growing up and they all were pretty effective if I stayed consistent with them. But as a kid I despised lotion so much. So someone would come near me with it and I'd be like “nope, not doing it”. So it wasn't really helpful, but now if I stay consistent I'm really good at it. And then later on once I was diagnosed with psoriatic arthritis, I had this one biologic that I used and it was for psoriasis and psoriatic arthritis. And it really helped my skin, but it didn't help my pain. So I'm off of it now. 

Kaleigh: OK. And then, Jackie, knowing how each person responds differently, what treatment options have you tried and what ended up working the best for you so far?

Jackie: Right, it's still just like what Sophia said. The topical creams were not great for me as a kid. I did not use them regularly though when I did, they worked really well. I went on a long stretch of time until about the summer of my senior year of high school, without taking any treatment. And then I started some anti-inflammatory medication right around when I started college. They didn't work very well. After that I tried a PDE4 inhibitor right as I was ending my freshman year, which did not go well for me at all. And then over that summer until now, I've been on a few different biologics. I was on a TNF blocker and IL-12/IL-23 blocker and I'm currently on a IL-23 biologic and that one's doing great for me. It's cleared up my pain. It's cleared up my skin and I'm very happy with that.

Kaleigh: Thank you for sharing. I have experienced the struggle of using topicals regularly. For me, sometimes just remembering to put on normal moisturizing lotion. I think that's a pretty common thing of could be hard to stick with that routine. So how did you both make the decision to go on a biologic? When we discussed previously before this recording, we all had mentioned that struggle of fear of learning how to give yourself the injection, and so how did you overcome your fears and what factors did you discuss with your health care provider? Jackie let's start with you.

Jackie: Yeah. So I was really concerned about being immunocompromised and the potential side effects, and I was very concerned about injecting myself. I ultimately did decide to do it because I felt backed into a corner. I felt like I would have tried anything for the potential to get some control back into my life. I also had a lot of family members that have been on biologics and have seen improvement so I wasn't super concerned. But I was in so much pain I was gonna try anything. I already at that point had given up some of my favorite hobbies due to joint pain and damage. And I overcame the injection fear a lot easier than I thought I would. I had my Mom do the first two at the very beginning, and then I was able to do it by myself, even through the different switches of medication. Although I did have my college health center do syringe injections, but they weren't auto injectors. 

Kaleigh: Gotcha. Thank you for sharing. Sophia, how about you?

Sophia: So when I was diagnosed, she was doing the full body exam on me and she was like, hmm, your left hip seems to be really sensitive. So you should get an MRI and then my next appointment after she got the MRI results, she was like “OK. You have psoriatic arthritis”. I was like “whoa, what does that mean?” And she goes “OK, what med do you want?” I was like what? So I didn't really have a lot of time to truly process or like decide what I thought would be best. And my rheumatologist, she'd heavily pointed me towards direction of biologics and not pills. So I took her recommendation for that. And so that's kinda how I decided in the beginning. And yes, I was definitely afraid of injections and I still am, pretty much. But for my first eightish injections, I did them all by myself because I didn't wanna admit that I needed help. It was kind of like a pride thing for me, 'cause I don't want anyone else being involved in my care. I feel like I should be independent with this. And then also I was kind of scared I was gonna fight someone if someone came near me with a needle. Also, I’d be like get away from me. Yeah. And then for getting over my fear, I definitely recommend using Lidocaine. There's some on Amazon. It's like a numbing thing and it works for me even if it is more psychological than actual result. I think it does numb the area pretty well, and that works for me, and now I go to the doctor when I do my injections and they do it for me. 

Kaleigh: I love the strategies you shared. Yeah, there are definitely solutions if you have a fear of needles or you're struggling with giving yourself the injection cause that was a really big hurdle for me. I didn't mind when other people did it but doing it to yourself is definitely different. The first time they made me stay at the doctor until I could give it to myself 'cause they're like, “hey girl, you got to be able to do this on your own so I'm so sorry you're crying here at the doctor, but the nurse was really sweet and she really encouraged me. But that was definitely rough. And then the next time I had to do it, I called my grandma who was a nurse crying. So I drove over to her house and had her watch me do it. And that was rough, but it definitely got better and I love what you mentioned about getting some lidocaine and how sometimes it can help with the pain. It also is helping with that psychological aspect of giving your injections. And Jackie, you had mentioned, there's the syringe injectors. There's also those auto injector pens and so sometimes those can be easier 'cause you're not actually seeing the needle and it doesn't really feel like it. And so that's also an option people can ask for depending on what's available for their particular medication. And so I wanna switch gears, we've been talking about how things were previously. I want us to think about where you both are now. And so thinking about how you feel about your disease. Do you feel more in control of your disease than you did previously? How are you feeling about that? And so, Jackie, let's start with you.                                                                                                                                                          

Jackie: Well, yes and no. It's a little complicated. I finally am seeing really great results with the medication that I'm on when it comes to my joint pain and my skin. But I do grapple with a few of the comorbidities. I have fibromyalgia, costochondritis, and some type of dysautonomia, but generally I'm very happy with how I'm improving considering a year ago, two years ago I could sometimes barely walk or get out of bed, and I feel like I have a sense of normalcy coming back again which I wouldn't have believed if you told me a year and a half ago.

Kaleigh: I'm so glad to hear that. Sophia, how about you?

Sophia: Well, I'm happy for you, Jackie, but I'm kinda of in the opposite boat right now. I have been on a biologic that's my second biologic and I've been on it for about 3 months now and it has not helped me at all. It helped my skin a lot, but it helped my pain zero. So I’m in so much pain every single day, it's really hard to do anything. But today, right after this podcast actually, I'm getting my first new biologic, which is good. But also there's another part of control which is like the mental idea of it 'cause sometimes it's easy just be like, oh, it's just a shot once a week, OK? It's just a shot once a month, whenever your shot is, and then sometimes it's like, whoa, I really have to do this for the rest of my life. Like, it feels like a lot of work sometimes. And as soon as it feels really easy, but right now it's feeling like a lot of work.

Kaleigh: Thank you so much for being honest about that Sophia. I love how you both said in your own way how it's complicated. And I'm definitely in that boat and I feel like a lot of people with psoriatic disease are where like you, Jackie, I have a lot of different comorbidities going on. And so for me maybe this thing is going well, but then this thing isn't. Sophia like you said you're in a lot of pain. It's helping your psoriasis, but the psoriatic arthritis isn't being helped. And so it's kind of navigating “well, this is good, but this isn't where we wanna be” and that idea of this is for the rest of my life potentially, and just thinking about that and that can be a really hard thing to grapple with. And so thinking on that, I'd love to ask what tips can you both pass along to other teenagers or college students? Thinking about younger people who have these illnesses, what tips can you pass along to people who might be struggling with their diagnosis or their treatment choice and struggling with the reality of having either psoriasis and/or psoriatic arthritis. Sophia let's start with you.

Sophia: For choosing a treatment, I would definitely recommend listening to what your doctor has to say, and even if it does seem scary, like shots or biologics, it's something in life that you can use to your advantage. Like, hey, if I can take a shot, then I can do my math test. So like there are some benefits to it.

Kaleigh: [Laughs] Like I can do hard things. We can do this. I love that, yeah.

Sophia: Yeah. Yeah, it really does build character and builds perseverance and stuff. So there's that good part of it. And then one thing that I learned that helped me a lot is that it's not a fight between you and your med or you and your diagnosis. It’s just learning how to work with your body and how to be comfortable in your own skin.

Kaleigh: Wow, that is, I've literally never thought of it that way before. That's really profound and such a healthy way of looking at that for sure 'cause there are definitely days where I've woken up and said, “OK, me and my health, we're about to have a cage match”. We're about to fight. Five things are going wrong and I have to call insurance today and everything's a mess. And so I love that that spin that you put on it. Jackie, how about you? What tips do you have or what are some things that you've learned that you want to pass along to someone else?

Jackie: I definitely agree with what you just said about how some days you wake up, and I like to say all the check engine lights are coming on. 

Kaleigh: Yes, yes.

Jackie: But my biggest advice is to find community cause this disease, and its symptom and its comorbidities and everything can make you feel so cripplingly alone, especially when you're so young or on the younger side. It's very important to find people that get it. If you don't have that be that for somebody else. It's also very important to have a very open communication with your doctor and to make sure that your doctor understands your comfort level and your limits. Cause there are some treatments out there that I felt very uncomfortable with, didn't want to be on steroids long term, and I’m very lucky that my doctor was very respectful and worked with me to find the good treatment for me. And that can be scary when you're so young, feeling like you're talking to this person who knows everything. But really, you know your body best and you need to listen to your body 'cause you know you the best.

Kaleigh: Jackie, that is such good advice. Y'all have both said such helpful things, You know, I've had these illnesses basically my whole life and how a lot of the ability to feel like I can advocate for myself, some of that does just come with time and age. And so I love how you're saying that's something you can do now even if it might feel a little hard. You go to the doctor and they're this authority figure, and they've been to medical school and all this. I love what you said, Jackie, about listening to your body and what you feel comfortable with. Cause at the end of the day,  you're the one living in your body. So it's important to have that confidence in yourself and learn how to advocate for yourself. So Jackie, you mentioned community and there's a pretty amazing story that we have about how the two of you met. I would love to hear how you guys met and what that community you found together has meant. Sophia, why don't we go with your perspective first and then we'll hear from Jackie. 

Sophia: So when I was first diagnosed, I got this little package in the mail and I was like, oh, they're celebrating I have psoriatic arthritis. And then I was looking through a pamphlet. It's like you might feel discomfort. And I was like, oh, OK, thanks for letting me know. But I go to the back and I find the youth ambassador program. That seems interesting. So I go and I sign up for the website and I do all the stuff I have to do. And then I get assigned to this girl named Jackie. And I'm like, oh, that's a cool name. (Yes, Jackie.) And then we ended up talking and we were really close. I think we're the two closest in the whole program. So we were able to actually meet up in person, and we also had gone to the same horse riding barn, which was really random. Yeah, we both were alright with the same form. 

Kaleigh: What! That's amazing. This is so crazy. 

Sophia: So that was like a really fun thing. And yeah, so we hit it off pretty well I think. And we have a lot of common interests, so.

Kaleigh: I love that. Jackie, how about you? What was it like finding out oh Sophia lives very close to me? We can actually meet up in person. That's really cool.

Jackie: Yeah. So I joined the program a little over a year ago and got matched with Sophia. Sophia lives about 10 minutes from my house and she goes to my old high school.

Kaleigh: That is so crazy. 

Jackie: We met up over the summer and I drove about 5 minutes and I think she walked. So it was pretty amazing. As a youth ambassador, I get to meet with people like Sophia, and that's really what I mean about making that community and the fact that we're 10 minutes away is even crazier because that's not very common. I don't think that's common at all.

Kaleigh: No, not at all. 

Jackie: And we really hit it off when we met. We got along really well, and we had a lot in common. What I really like about my relationship with Sophia is that we can talk about things that aren't our illness, and that's really special to me because I'm big on not making it everything and not letting it consume my life. So that was really special. 

Kaleigh: Yeah, I love that. That's definitely one of the benefits as you're saying, this community where we have this thing in common and we can support each other, but also that's not the only reason why we're talking and getting along, and not letting our psoriatic arthritis be what defines us. And so, Sophia, how has this relationship been of benefit to you? 

Sophia: Well it's beneficial to me because of like how close we are so we can meet up pretty much anytime we want as long as we're both free. And then even though we don't talk a huge amount, it's still really nice to know that I have someone who's on my side. And like who I can counsel with or talk to about biologics or anything I need. And then, like she said, we also have other common interests. So if I was like, hey, what do you think about this? It would be totally fine. And we could just have random conversations. So I think that was really cool too, and I agree with what she said about not making psoriatic arthritis your whole thing, like you should have other things too, which is what I like about our relationship. 

Kaleigh: Thank you so much for sharing. This is truly fate. That is such a cool, crazy coincidence. I'm a one to one mentor and so I provide similar support to other people who are reaching out for resources, questions, or just someone to talk to because as you both have said, it can be isolating and so having someone who understands and you don't have to “Oh, well, let me explain what this means” and it's so comforting. So you both have mentioned that you’re youth ambassadors. So what is being a youth ambassador mean and what do you do for NPF? How about we start with Sophia?

Sophia: Well, I'm kind of a new youth ambassador and I'm not totally sure how to spread my words around, like my support, but I have been invited to this podcast and I think that's a good start for me. And I think in my personal opinion, it's about helping people and letting them know that you're not alone as well as sharing your experiences. If you have tips and tricks, to just make life a little bit easier 'cause having this disease it really can be immobilizing in many ways. Not just physically, but also mentally, like you're really drained all the time. Fatigue is huge, at least for me. And then all the other side effects, life in general, you have school on top of this. You have a job. So it's just hopeful to have some people that are there for you.    

Kaleigh: Thank you. And Jackie, how about you? What is being a youth ambassador mean to you and what do you do for NPF? 

Jackie: Yeah. So like I said, I joined the program a little bit over a year ago. I would say generally a youth ambassador serves as kind of a role model and a leader that helps foster that community that I've mentioned a few times. As a youth ambassador I get to meet people like Sophia and the rest of our team from all across the US. I became a youth ambassador to connect with others who know the struggle. And I also was presented with a bunch of really cool opportunities. I was able to speak at the Take Action event in September at the Philly Zoo, and I'm actually going to be going to New Orleans to the Impact Summit. So it's really an amazing experience. I know. I'm so excited to meet you. 

Kaleigh: I'm super excited to go.

Jackie: So it's really an amazing experience and it's really a good way to meet other people like yourself that are going through the same things.

Kaleigh: Thank you both for being here today and sharing your perspectives on treatment options and addressing your fears. I have learned so much from just this conversation with you guys. And so, do you have any final comments you would like to share with our listeners? Sophia let's start with you.

Sophia: I would like to say that it's really important to find something that is beneficial to you in another way 'cause you just got this huge new diagnosis and it's like a huge thing. So I would recommend starting a new hobby to distract yourself from it. For me, I started figure skating and I love it and it gives me an opportunity to take my mind off of it while staying active. Staying active is something I struggle with cause of how much pain I'm in, but when I'm figure skating it's like, oh, it's OK. I think I can push through the pain, just have like some fun here. So try to find something that's fun. I think one of the most important things is like your attitude towards it 'cause if you're sitting there like, oh, I hate my life, I hate everything, and you're not gonna get any better. You're just not gonna, feel the motivation to get better.

Kaleigh: There's a lot of things that are, like, positive and stuff. And so it's not the end of the world, even though it's OK to feel like that sometimes, but just don't want to let yourself feel that way all the time. And then, Jackie, how about you? Any final comments you'd like to share?

Jackie: Yeah, so I definitely agree with Sophia. That was a big wall that I hit. I had to get rid of a lot of the sports that I did. I used to lift. I used to do track. I had to stop all of that. it's really important to find something to live for and not make your disease something that feels dark and alone. So now I do a lot of stuff with plants and reptiles and animals. And I did say this at one event I spoke at, I think it's really important for really anybody but especially young people that are either starting out with their diagnostics and treatment or those who are well into it, they all should know that they're never alone in this battle and it's difficult. It's exhausting. It's so draining. But there is light at the end and there is a treatment out there. It might be really hard to see that right now. But it does get better.

Sophia: Also, something that has helped me is breaking it down into smaller steps like sometimes I wake up and I get out of bed and I'm like “Oh my God, I'm in so much pain” and I take it down to like little steps. I'm like, OK, well, what's one thing I can do right now that would involve less pain or make me feel a little bit better? And then I get through the day by doing that. That makes it a little bit easier than thinking of like I have a huge day ahead of me. So that's helpful too. 

Jackie: Absolutely. The little wins.

Kaleigh: Yes, I do that too. I'm like, oh see, we did this one thing. Now we can do this other thing, and it's not this whole giant monster. Thank you both for all the wisdom that you've shared today. I've felt the same thing and been where you guys are at even though I'm a little bit older. And what you've shared today, I really know is just gonna help people who are in high school, college, going off to college, or honestly anyone who's been diagnosed. You can get these conditions at any age. And so having people from these different perspectives and times in their lives, sharing what they've learned is so helpful to anyone. And so I just want to thank you guys for being here today. Thank you so much for your comments and wisdom today about living with psoriasis and psoriatic arthritis and your perspectives on treatment options, which will be of help to others in similar circumstances. For our listeners, whether you're looking for treatment options, community or how to find support, contact the National Psoriasis Foundation by emailing our Patient Navigation Center at education@psoriasis.org. Get free resources, individualized recommendations, and answers to your questions. And finally, thank you to our sponsor, Bristol-Myers Squibb, who provided support on behalf of this episode.