Providing Answers, Support and Hope in Georgia

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Host 0:04
Welcome to The Expert Series, brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts in lupus to discuss topics to help you live better. Thank you for tuning in to today's episode. My name is Alyssa and I'll be your host.

Today's guest is Dr. Rubinstein. And she is a pediatric rheumatologist at the Children's Hospital at Montefiore in the Bronx, New York. Her research focuses on improving mental health and disease outcomes in youth with lupus and has funded and has been funded by the Lupus Foundation of America, the Rheumatology Research Foundation, the Children Arthritis and Rheumatology Research Alliance, or CARA, the Arthritis Foundation, and the National Institute of Arthritis and the Musculoskeletal and Skin Diseases at the NIH. She's a co-leader of CARA mental health group. And she serves on a board of directors for the American College of Rheumatology and on the Medical Scientific Advisory Committee for the Lupus Foundation of America. Thank you so much for being here with us, Dr. Rubinstein, we're so happy to have you.

Dr. Rubinstein 1:15
Thanks so much for having me. It's an honor to be here and talk to you.

Host 1:20
Alright, so we're gonna jump in the first question. How does lupus affect teenagers versus adults? And does the age at diagnosis change health outcomes? And can you address you know, what is considered a teenager? Or the age range? Or who's considered a teenager?

Dr. Rubinstein 1:38
Sure. Um, so to answer your last question, actually, kind of depends on where you look. And in general, we usually talk about teenagers being between the ages of 13 to 19. But in medicine, we often kind of lump them together with young adults who are 20 to 25. Because this is also sort of a major age for change, developmentally and physically. And then sometimes it also gets sort of lumped in with pre-adolescence or tweens as they start going through puberty, again, because that's a distinct age from childhood.

So, so oftentimes, when you hear us talking about sort of the issues that affect teens and young adults, sometimes we're talking about an age range that's as wide as 12 to 25. But at the heart of it, we're we're mostly talking about kids in those in those teenage years. And as they're learning to be more independent, socially and emotionally. And as they're going through sort of the all the physical changes that are involved with, you know, puberty and late puberty and developing adult bodies.

So the first question is, is even more complicated. So whether lupus affects teenagers differently than adults. So it definitely affects children differently than adults. And there's been there have been a lot of different studies that have looked at cohorts, where they've separated, they've looked at group of people, groups of people with lupus, and they've separated out those who were diagnosed in as, as young children and those who are diagnosed sort of in the more typical years that we associate with lupus diagnoses, which, you know, some people call like, the childbearing years, but the years around, like, the 20s, and, and maybe even into the early 30s. And we know that children, when when people are diagnosed with lupus and childhood, they're more likely to have severe disease and certain organ involvement, especially kidney disease and brain disease. And, and that trend sort of continues into the early teenage years, too. So it seems that people who are diagnosed in those early teenage years that are right around like before, and in the early part of puberty, they oftentimes look a little bit different than people who are diagnosed later in life.

And, and again, those major differences are really around the severity of the disease and, and how likely people are to have certain important organs involved in their lupus disease. And the ones that we think of, I think, especially are the brain and the kidneys. But there's another sort of aspect of it. That doesn't have as much to do as the type of lupus that kids and young adults Let's get but the impact of it on people's lives. And the important thing to remember is that, you know, as people are developing physically and emotionally and cognitively, as they're developing in the teenage years and into the young adult years, having a new diagnosis that, like lupus, where it's a major, it can be a major sort of disruption to people's lives, it can disrupt people's social development and their academic development and their emotional development as well as, like their physical development. And so that can really, that can impact people's people's lives, in ways that will look different, as opposed to people who are diagnosed later on in life. So, you know, when there have been a few studies that have looked at young people and longitudinally through time who were diagnosed with lupus, at younger ages. And, and we know that it can affect it can affect sort of their trajectories, and multiple different ways. And those ways can, aren't just, you know, like, what people look like physically, how tall they get, how they're, you know, how their organs look how their bodies look, but also like, what kind of jobs they have, and what kind of relationships they have with people. And, and that's why it's so critical for us to really support young people who have, who have been diagnosed with lupus at earlier ages, and who are being diagnosed at this sort of, like critical age range and the teenage years and young adult years.

Host 6:47
And how does treatment differ from teens and adults, or like the younger ages?

Dr. Rubinstein 6:55
Yeah, so it's, it's actually probably not so different. The, the real difference again, is like the impact of it on people and, and it the treatment itself, really, I think depends more on the type of lupus and the organs that are involved rather than maybe the age at which people are diagnosed. So in young kids and an older adults, sort of the mainstays of lupus treatment are hydroxychloroquine, or anti-malarials. And then depending on the level of involvement, and the different organs, there will be different immunosuppressants that we may have to use to control the disease. And then steroids are unfortunately used still across the spectrum because they're life-saving in terms of sort of dampening down life-threatening inflammation and allowing us to get people through periods of flares and high disease activity. And then and also across the age range, we think about bone health. So sometimes people are on vitamin D and calcium for bone health, and then other medications as needed. So again, lupus is really like an umbrella of lots of different manifestations and different kinds of forms that it can take. That will sort of indicate sort of what kind of medications people needs to sometimes they're on medications to protect their kidneys, for instance, or sometimes they have to take anti-seizure medications, or medications for depression and anxiety. Those can be similar for teens and adults.

Again, the issue is that people who are diagnosed and younger ages tend to have sometimes more severe disease, and we tend to have to use sometimes more medications or stronger medications. But we rely on a lot of the same kinds of treatments as rheumatologists use for adult patients. And then the complication is that we have to think about how these treatments and how these medications affect the growing body and the growing brain. And the teenage years are kind of especially challenging because we're thinking about that which we also think about in treatment of young kids with lupus, but we're also thinking about sort of, like new kind of adult issues that we think about and, and an adult such as like reproductive health and, and how our medications are affecting people if, for instance, they were to become pregnant. So there's this sort of like, overlap and kind of Venn Diagram of some of the adult issues coming into play and some of the issues that we think about in childhood in this age range that make it challenging,

Host 9:49
And that does sound like a lot depending on the medications, the disease severity. But you know, how can a teenager cope with having lupus? And, you know, what are some specific challenges, teens have faced coping with their lupus? And do you have any coping strategies?

Dr. Rubinstein 10:08
Yeah, so I love this question. But it's, it's actually probably a question that's better for a young person with lupus. So I think that what I can, what I can give in terms of like answers for this, or is what I've heard from my own patients and from other people that I've spoken to with lupus. I think some of the major challenges that I have heard people talk about our I can kind of sort of, like categorize them into like three major things or themes. One is, people I think, can really struggle with sometimes the invisibility of the disease. And lupus is a remarkable condition in the sense that it can look and feel very different from person to person. And in some people, the manifestations - so the ways that it's affecting people's bodies, or their selves - is is not as noticeable on the outside, but it can still have like devastating sort of effects on how people function from day to day. And I think that that can really create some challenges, especially to teens who may have very ambivalent feelings about how much they want their friends or other people in their lives to know about whether they have lupus or about their own lupus, figuring out how to advocate for themselves, and ask for sort of what they need and, and how to cope with the sort of like balancing act between like, maybe not wanting to be so different from their friends, but, but recognizing that they are going through something different. And also recognizing that sometimes people aren't going to notice that how, you know, all the challenges that they're going through, because they're not quite as apparent as some other physical conditions.

So that's one major, major challenge, I think, another probably major challenge is, is treatment. So treatment, both in terms of medications and in terms of appointments, and managing the, you know, care and all the medical side of it. So a lot of our medications are not easy to take, they have side effects that people hate, rightfully. Steroids is probably the most infamous for having side effects that can change your appearance and the way you feel, and, and motivating yourself to take them can be really challenging. And then, and then there are medications that might not have as many side effects, but that are really important to be on even when you're feeling totally fine. And they help protect people from having flares in the future. And that's like another sort of challenge for motivation, because like, especially I think, for young people who may want to sort of like go about their lives at certain points where they don't want to feel different or they don't want to sort of bring attention to having a condition. It may be really hard to motivate yourself to take those medications.

And then also, we're talking about sort of the burdens of management on the medical side that aren't related to medications, but just related to like appointments. And if you think about all the different organs that lupus can affect, like some of our patients and young people with lupus, they see a rheumatologist obviously, they see a nephrologist, a kidney doctor, a dermatologist, a neurologist, a cardiologist, a pulmonologist and ophthalmologists, they're all these people that come into the care of their lupus, not to mention like their regular primary care physician and maybe mental health providers too. And that is a huge burden to add to somebody's like schedule of and, and that. And that's, that's, that's hard. That's what's difficult. I mean, even people who are doing great with their lupus, we often we tell them that they need to be we tell teens they need to be seen every three months, even if things are going really well and that that's a burden, as well. So there's a lot of sort of like burden of just caring for the disease. And then I think the third thing theme that I hear a lot about is the unpredictability of the disease and this is something that sometimes that we share, I think between people with lupus and other and other also other diseases in rheumatology that you know, inflammatory diseases, they can kind of come and go and you can flare up without much work. Without us really understanding why exactly it's happened. And it can feel incredibly unfair to a person who's taking care and managing, and feels like they're trying to do everything they can to be on top of it. And despite that, they can still flare that and that can really can be devastating.

And I think just understanding that that can happen, is also a burden, it's an emotional burden, like to, to end, like trying to plan your life and trying and trying to, like go about life with that sort of, like anxiety that, you know, at some point, you couldn't have a really serious flare, even if you're taking good care of yourself. So those are all really big things that we sort of that, you know, are layered on top of all the stressors of life in general, as you're going through the teenage years, and there's a lot of just a lot of drama and, and for, you know, good and bad drama. And that happens during those years, as people sort of figure out who they are. And friendships change and relationships between parents and change in understanding sort of who you are in the world. And new romantic relationships may arise, like all of those things are really like big things that come with their own sort of set of stressors and overlying, overlaying that, you know, all the issues around the taking care of this chronic disease. And all those issues that come up on top of that is, is a lot.

So this, the most important part of the question, really, I think, is about coping. And again, this is from, you know, listening to what has been helpful to the people that I know who have gone through this, I think a big a big support for people and a big sort of coping mechanism is around sort of techniques on around stress relief. And this doesn't have to be, you know, seeing a psychiatrist or a psychologist and getting sort of very formal mental health care, this can be around, sort of just finding practices and daily life, like meditation practices and mindfulness techniques to kind of help handle some of the anxiety, and what, you know, what psychologists will call sort of reactive depression from illness, learning to kind of be in the moment finding things in life that bring people like joy, or allow people to kind of like, take a deep breath, and, and just, and, and kind of very, sort of, very consciously sort of, like take care of themselves and feel what they feel. So they're there sort of practices that people can work on and, and help with some of the stress around the illness and that sense. And then there's also support, social support from family and friends, but also probably other a lot of people find that it's helpful to connect with other youth with lupus who are going through similar things, and maybe if not lupus and other chronic illnesses, and reaching out and sort of making friendships and alliances with people who have gone through what they're going through that their friends and their family might not understand. And sort of the deeper way that somebody else who's actually experienced this does, so that that can be really meaningful, and it can help with coping with some of the stress of the illness. And then finally, I think just finding meaning in life is really helpful for many people. And this can be through faith-based practices, and even writing and art. ways that people can kind of process what they're going through from day to day and find meaning in their life and, and find beauty and, and their life that that that I've heard is also like, hugely important, I mean, for anybody but also, specifically when you're going through kind of a something as hard as taking care of a chronic illness like lupus.

Host 19:08
Now sounds like you know, teens with lupus have a lot to deal with, especially with their appointments and medications that they have to take. So what kind of information should they you know, keep with them or have on hand to be able to communicate with their doctor or other health care providers, so they get the best treatment?

Dr. Rubinstein 19:31
Yeah. And this is like, this is such an important question because often people with lupus are taken care of, again by multiple different doctors and providers, and maybe even those doctors span different sort of medical centers and hospital centers and they'd may not have access to notes from one center to another. Maybe they even you know, span states or counties and And so, so this is this is another sort of burden of like managing lupus. And I think there's some basic things that people can kind of have on hand that are important. Sort of, you know, maybe the more obvious basic medical information like what medications someone's on, what allergies they might have. And then major manifestations, so major ways that lupus affects your body, or the the major organs that are affected. Sometimes I'll even like put together a cheat sheet kind of with patients that will keep updated where it has, like how they first presented, like how they first how we first sort of discovered they had lupus and all the different sort of parts of their body that it affected, and what medications they're on, they they've maybe even been on but what most importantly what medications they're on and what allergies they have.

But that's a lot of information to kind of ask a teen to kind of keep hold of in their head, and sometimes just writing it down somewhere having it on an app and your phone or, or some other form, so that it's easily accessible. I think the other things that aren't as obvious that is important to communicate with any doctor, but especially a doctor who's like intimately involved in your care over a long period of time with a chronic illness is who's in your support circle, like who's your support at home, who's helping you manage your lupus, who's helping you make medical decisions, and who's helping you like on the day to day. So sometimes those are different people. And for instance, like I have some patients who they're, you know, their mom is really the person who helps them make decisions about what treatments are best for them alongside with us, let's have a conversation, obviously, like with the doctor as well, but it's a shared conversation with them and, and their mom, but then when they go home after school, the person at home is grandpa, and it's not their mom. And so the person who is involved in kind of like supporting them taking their medications is not somebody who might be at a clinic visit. But it's important for me to know that because if I make like a change in their medication, sometimes I you know, like, we'll get that other person on the phone to communicate it with them. So they understand this is the change that we made. This is why it's so important. And this is, you know, they can be part of that understanding, and they can better help support the teen. So I think that's an important area that sometimes we overlook a little bit. And then, and then I think it's really important for your doctors to know what your major goals are in life, the things that are really important to you, that make you "you" and help your doctor understand kind of who you are. Because that plays a role in. And sometimes in medical decision-making. And the treatments that come up if it's if the if like fatigue is really like, you know, if you you have a major goal in life to be like an elite athlete, and you're like some parts of your physical functioning of your activity are getting in the way of that or if you're if it's really important for you to be able to, to travel or to if it's really important for you to whatever it is whatever goals there are, you know, how people think of your lupus and how people treat your lupus, you want them to kind of keep that in mind. So they can be true to that. And they can understand sort of what makes you tick and what motivates you to take care of yourself. So, so I think that's something that's super important to communicate as well

Host 23:55
That's a lot of information that I think is important for not only teens, but their caregivers to know. And kind of sort of in that same line, you know, what are some, you know, resources that are available to help teens manage their lupus?

Dr. Rubinstein 24:12
Yeah. So luckily, there are a good number of resources at people's fingertips through you know, like, what we can find online. I think sometimes the harder job is figuring out that there's so much information online, it's figuring out what is reliable and what maybe is not as reliable and something that may lead you a little bit of stray that may or may not be as helpful. So the Lupus Foundation of America has an amazing resource library and they have certain articles that are specifically geared towards teens and young adults and for almost like every different issue you can think of related to lupus. And I think just that in and of itself is a good place to learn more about the disease. And then there are a lot of self-management tools that are coming up. Some of them are specific, like smartphone tools or apps that people can use alarms for medications or certain apps to that almost like gamify or make taking medication sort of more fun, so that people can kind of motivate themselves to take care of themselves. For people that are 18, and older, SELF, through the LFA through the Lupus Foundation, is like as an online tool that has both sort of information, like it's connected to the library with it with information that people can find about taking care of the disease, but also sort of some management aspects that help people kind of continue to, to sort of organize their information about their own lupus and, and help them take care of themselves and on top of their medications, but you don't need like a fancy smartphone too.

So I especially if they're young teens who don't have smartphones, these days, if I don't know if that exists, but I can, from my own parenting experience, I'm a little bit hesitant to give my tween a smartphone, but there are things that you can, you can rely on just like alarms on watches and actual tools that you can like print out and, and whiteboards you can keep up in your room just to keep track of like, symptoms that people might be having or have of medications. And so I think it's really important to teach kids at younger ages to, to take initiative and understanding like this is this is part of, you know, their job and taking care of themselves is kind of keeping track of their medications and, and helping to be a partner and making sure that they're getting their meds. There are a lot of other sort of resources. Also, we talked a little bit about the importance of making connections with other people with conditions like lupus and with that can be helpful in and of itself to manage the disease. So there are support groups that are people can find local in-person support groups. There are national support groups, and now there are a lot of online support groups and their, their groups through social media, there's a great group called Lupus Chat that has brought a lot of great information to people with lupus and it kind of works as a forum for people to share resources and tools and knowledge with other people with lupus. On the pediatric rheumatology side, there's a new-ish organization and podcast called Take A Pain Check that's led by youth with rheumatic diseases and it's for youth with rheumatic diseases. And so connecting to those kinds of organizations is another way to get to sort of share and get information and tools and help people manage these conditions.

Host 28:34
There are a lot of resources for them to pick from, which is good.

Dr. Rubinstein 28:38
Yeah.

Host 28:39
And, you know, teens like to sometimes, some teens, are very involved in, you know, you mentioned sports, and theater, you know, what are some ways that they can stay healthy while remaining involved in those school activities?

Dr. Rubinstein 28:55
Yeah, so I love this question. I think it's a great point for many reasons. So being active in school activities and extracurricular activities are often an incredibly important part of maintaining physical, emotional and socially healthy lives for teens. And we know that lupus not only challenges teens physically, but can create emotional, social and academic challenges. So finding supports to ensure that teens can participate as much as they want in school activities, whether they're academic or extracurricular, I think is really important. And I think it's important for us to acknowledge that sometimes having a chronic disease can be particularly isolating for teens. So being involved in school activities can help combat some of that loneliness and isolation. If teens are interested in sports or dance teams or any type of activity that allows them to be physically active, it's always my goal. Old to ensure that we can work to get them to a place where they can incorporate that into their lives. And more and more, I think we're understanding that physical activity is an important tool not only to maintain health and well-being overall but it can improve specific symptoms of lupus so it can improve fatigue, it can also improve sort of general quality of life and people with lupus. And, and it sort of another aspect of this is that the habits that you build at this time in life, and during the teenage years, they're often carried through adulthood. So building a practice of healthy physical activity is really important for ensuring healthy lifestyles into adulthood that people will benefit from throughout their lives. So I guess the other sort of balancing measure with school activities is also recognizing that depending on the activity, sometimes modifications may need to happen to allow teens with lupus to fully participate. And this is really going to depend on each person and their particular symptoms and treatment and how lupus is affecting them at whatever specific time that they're, you know, engaged in these activities. But some basic approaches are just remembering to wear sunscreen, staying hydrated, getting enough sleep, generally listening to your body, and then speaking up when something doesn't feel right. But usually, we really encourage people to kind of remain as active as possible. Even when their lupus is somewhat active. Because there are a lot of benefits again, socially, emotionally, and physically, with being connected to other people and being physically active.

Host 31:48
And I guess lastly, you know, how can adults support teens as they transition into adult care?

Dr. Rubinstein 31:57
Yeah, I think one of the hardest things for parents is finding the balance between supporting teens and stepping back and giving teens more and more autonomy to make their own choices and to learn how to take more active roles for their lupus care, but also in general and their lives. So one of my colleagues, Dr. Rebecca Sudan from Duke, she's a med-peds rheumatologist and as specialist in lupus, and she takes care of lupus patients across the age spectrum. And I love the way she describes it, she says that you have to allow your kid to take on the role of becoming the CEO of their own life. There, there are a lot of changes that happen approaching sort of the 20s and into the 20s. That can be overwhelming to young adults, even if they don't have to manage a chronic disease. Often people oftentimes people are moving at that time, they may be moving to a completely different geographical place or with a different culture, they may be getting a job for the first time, they may be attending college, and managing challenging course loads. On top of all of that, when you have a chronic disease, like lupus, you're also at the age where people are transitioning from pediatric doctors and sub-specialists to adult care models. And this can look very different. It depends on the practice. But sometimes this means that the visits are a little bit more hurried. Sometimes it means that there are fewer support services available in clinic. The clinics may physically look different, you know, people joke about this a little bit that you know, you walk into a children's hospital or a clinic or a pediatric rheumatology clinic. And they're all these like bright colored walls, and then you walk onto the adult side and everything is sort of gloomy looking. And we've had patients who've come back and talk to us about how they don't like physically waiting in the waiting room because they're not with kids and, and families. They're with much older adults and just that that feeling is very different. But there are a lot of other things that might change as well in the culture of adult care. So there's oftentimes a greater reliance on self-advocacy. Maybe even the role of the rules of the clinic and how people connect and communicate with their doctors are a little bit different. Maybe the expectations and the rules about being late are different. And people are used to being able to walk in 10 or 15 minutes late, but that's not the case anymore, just because there are so many more patients to be seen. So there there are all of these sort of like differences in culture that people have to manage and that can be kind of off-putting and can turn teens and young adults away from coming into their appointments if they don't know what to expect and they're not prepared.

So I think that there's a role that adults can play with that, not just the, the important adults in people's lives like parents and other support, personnel support, but even the adults like us, the pediatric rheumatologists who are taking care of kids and teens with lupus and helping them make this transition and helping prepare them. And the truth is that obviously like rheumatologists who see adults are fabulous people care a tremendous amount and have lots and lots of expertise taking care of people with lupus throughout the important milestones of adulthood that we aren't as comfortable with. And they want to partner with patients just as much as pediatric rheumatologists do. It's just about preparing people for sort of the different culture and the different expectations. And parents can play like a really important role and this transition period too, because just it may not be maybe the expectations are different for the kind of the role that I play in the clinic visit, but they can often still be there as a support and maybe as a second set of ears or a note taker. And help young people kind of manage some of the differences in the new responsibilities that they have taken care of, of, of lupus and taking care of, you know, all of the things that go along with their medical care. But these are, it is like a big change in the best way to sort of help support youth as they're going through this is not to make it an on-off switch where you have one set, you have sort of like one practice and your pediatrics, care. And then the next day, suddenly you're an adult care and everything's different. We try hard. There's a whole area of study around transitioning to adult care. And you'll hear a lot of pediatricians talk about transition policies that we talk about with patients maybe even as early as 12, 13 and 14, we start kind of prepping people that this is going to be something we're going to work on together. And it's something that we should be partnering with families to teach teens how to talk about and how to think about their health and their conditions, like lupus as they mature into adulthood. But we still have, I think we still have a ways to go to make sure that people have really smooth and good transitions. And again, I really think it's a lot about sort of partnering with families and, and youth to make sure that we're supporting them the best way we can.

Host 37:41
Awesome. Thank you so much. Dr. Rubinstein. Is there anything else that you might want to add?

Dr. Rubinstein 37:47
Um, I get it there is I guess there's one thing that I would add, I think I want I love working with, with teens and young adults, I think that this is like it's a really exciting time in people's lives. Some people find it sort of a challenging time to connect with people. But I think that it's just an amazing privilege to work with, to work with people at this sort of critical sort of junction in their lives. And I think that teens have, and young adults have so much to offer. And one of the areas that we're sort of moving to as a field is really engaging in engaging people and also in like the research that happens to help us take better care of youth with lupus and with people with lupus that that teens and, and young adults, sometimes we don't give them enough credit for all that they can bring to the table with their skills and their knowledge and their personal experience and their motivation and their enthusiasm. There's so much that they can bring to help us better understand how to take care of this condition and make things better for themselves and for the next generation of people with lupus who are coming after them. And I'm really hoping that we find more and more ways to involve them and, and building sort of the future with regards to research and the development of like new treatments and care of people with lupus. I think that's a really exciting area that we're moving into and some of the different research organizations. So I encourage anybody who is in this age range to find ways to get involved and think about if they're interested in how they can be a part of that community, not just on the patient side, but also on sort of the research and designing treatment side as well.

Host 40:13
Awesome. Thank you so much for that edition there. Let me say thank you so much, Dr. Rubinstein, for talking with us about how lupus affects teens. We appreciate your time and expertise. We invite those of you listening to check out our past episodes of The Expert Series by visiting lupus.org/theexpertseries, where you can also subscribe to get alerts when podcasts are released. If you have any lupus-related questions, please reach out to the health education specialists by email lupus.org/healtheducator or by phone at 1-800-558-0102. And we'd love to hear from you. If there's a topic you'd like to see covered, email us at info@lupus.org. Thank you until next time.

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Providing Answers, Support and Hope in Georgia

The Expert Series: Lupus and Teens