Multiple Sclerosis: Joyful Living Guide - Healthy Lifestyle and Brain Health

7 December, 2025 Guests Interviews and Charity events

Beauty, Style, and MS: Practical Tools for Everyday Confidence

In this episode of 'BeeWellwithMS,' host Dr. Agne Straukiene, a neurologist, welcomes Roxy Murray – a keynote speaker, patient advocate, and champion for diversity, inclusivity, and true health equity. Living with multiple sclerosis (MS) herself, Roxy discusses her journey of balancing fashion and health, detailing how adaptive fashion can empower those with disabilities. The conversation delves into practical styling tips, adaptive methods, and the necessity of an evolved fashion industry that includes and celebrates disabled bodies. Listeners will gain insights into how functional and fashionable clothing can meet the unique needs of MS patients, covering topics like the impact of MS symptoms, adaptive beauty routines, and more.

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Welcome back to Be Well with MS podcast. I'm your host, Arjagnes Orkien, neurologist. The space where we bring science, lived experiences, creativity, and humanity together to support people living with MS. Today, I'm absolutely delighted and thrilled, and I would like to welcome someone whose voice has been reshaping how we think about the disability, fashion, representation, and empowerment. Roxie Murray is a keynote speaker, patient advocate, and powerful champion for diversity, inclusivity, and true health equity. Living with multiple sclerosis herself, she has devoted her career to making sure that no one in our community is unseen or unheard. With a foundation rooted in art and design, Roxy blends creativity with activism in a way that is both authentic and radically transformative. Her work amplifies the voices of people from underrepresented and marginalized backgrounds, especially those who are ethnically diverse, disabled, and LGBTQIA plus. But one of Roxy's deepest passions and the heart of today's episode in discussion is adaptive fashion. She brings a vision of style that is not only beautiful and functional but liberating. Her goal is simply yet profound to help individuals with disabilities express themselves confidently and authentically through fashion, design, and personal style. Today, we'll explore clothing and makeup and how can this become tools of empowerment. Even with the fatigue and mobility challenges and hand tremors make daily routines feel more complex, but we'll try to understand how to overcome these barriers. And we'll talk about the practical styling tips, adaptive methods, and makeup applications, and and the bigger picture, how the fashion industry can and must evolve to truly include and celebrate disabled bodies and identities. So, Roxy, it's a great honor to have you with us today, and welcome to Be Well with Endless. Thank you so much. That was an amazing introduction. I really appreciate that. And I really have to be here and to talk about this with you. It's a topic that's really close to my heart, but, also, I love what you personally do for the community and in your own practices. So I appreciate you having me on and having this conversation with me. Thank you, Roxy. So your journey is incredible, inspiring, and am eager to dive into into our discussion and learn more about transformative power of fashion and how it can be a profound tool for personal expression and empowerment and inspiration. Maybe let's get started and talk about the your advocacy work. And I know that it's deeply inspiring with your personal experience living with MS. And how has this journey shaped your approach to fashion and styling? Well, obviously, being diagnosed with MS took, like, essentially at the start of my journey. That was eighteen years ago plus actually, might be nineteen, almost twenty now. I studied fashion. I love fashion. That's, like, my number one thing. But it took a lot of my energy, and I was going through a change where I was take coming to terms with living with MS and uncurable illness. And in that time, I felt like I lost a lot of my personal style. And that was that when a lot of my personal self worth. A lot of my self worth was wrapped up in art and in fashion. And I couldn't give myself that. Like, that's thing that made me feel good day to day, I kinda lost it. So within my journey, I kind of use the feelings I was having to look at how I could find that again. Where could I find that that part of me that made up my personality? Because I didn't wanna give that up to an illness or disability that I had acquired. I still felt there had to be a way that I could live with MS, live well, and still be who I was and dress in a way that made sense to me and allowed me to feel like myself and present and beautiful in the world. While doing that, I looked at loads of different labels, like different clothing stuff that I could find. And I didn't see a lot of it at that point that really either lended to my personal style or lended to ease of dress for people with disabilities. There's a lot of clothing brands as everyone knows. There's a lot of amazing clothing brands, but not all of them, the pieces when you're having your high fatigue days with MS, are easy moments to feel stylish in a way that's not making you feel overwhelmed or taking the small amount of spoons that you have in that day. And I want to talk about it essentially. I just started being like, hey. Where's the clothes that, like, make me feel good and allow me to get dressed in the morning with ease in a way that might matter what my MS is presenting me, because, obviously, that changes day to day as you know, that I can still feel like me in those moments. And that's how I started my advocacy. That's kinda start that's what's kind of gave me that power to stop talking about it. And then I kinda landed towards my friends that also were in the fashion industry making amazing changes, and it brought me to an adaptive fashion space. I think just to to reflect, you know, how colors are influencing our perception of the world. You know? How do we feel when we are dressed up, when we have a makeup on? You know? It's it's it's a different dimension, different layers in general. You know, we we like to look good. You know? We always looking for some sort of solutions to make us feel good. You know? Sometimes women spend a lot of time buying things, and that's a burst of their dopamine, you know, a neurochemical that gives a a sort of a good feeling. So and then actually putting on things, you know, that's another sort of and if you in particular, something that really fits and makes you feel comfortable. I think it's it it really improves your quality of life, and we don't discuss clinics. And, I think such a an interesting, fascinating topic to tackle and and sort of get get into deep understanding what makes people confident, happy, and bright as the day. And maybe almost it's like, how do you set up, you know, for the rest of your day? Like, how what do you do in the mornings? Like, you know, how how do you how do you cope? And I think it's very, very insightful what you just said, and it's clear that your perspective on fashion is both unique and impactful. The way you look when we meet face to face and and see each other is always something to learn from, you know, matching certain colors, certain textures, and and and shapes of the of the, you know, clothes. And I think let's talk a little bit maybe from the perspective of the functionality and fashionable clothing. Many of our listeners are always looking for practical advice, you know, because there are some symptoms that really limits how people can prepare for the day, you know, whether that involves waking up and feeling exhausted and fatigued. Sometimes, you know, there are some tremors. There are some mobility issues. Getting and having shower is another challenge for people and then putting the makeup is sometimes is not, you know, even on on the table, you know, because it's it's difficult to look after the hygiene, even that. You know? What are their top recommendations for choosing the clothing that is not only functional, but also keeps the style high? You know? Yeah. So as for backgrounds and styling, I had to relook at, like, what I could do. What do I do in styling that could work for me in my day to day life? A lot of it was planning. So when I had, like, good days or good MS days, I would look at, like, why didn't I take that time to sit there and plan outfits that make me feel good? But they didn't just come from what was inside my house and the clothing that I already had, but it also came about relooking at what my current needs were with MS. And actually, like, what can I do on my worst day versus what I could do on my best day? So when I was lost in one of the neurological places that we go to, someone's like, oh, I really like the outfit. And I explained to them, like, this outfit, I tried to make something that was both professional, but was easy to dress for me. Because when you travel with MS, I was so very tired for the first two days. It takes me a bit of time to come back to my highest level of productivity. And I went for a stretch velvet skirt. Like, no one knew it was a stretch velvet skirt, but it was a stretch velvet skirt. But it still looked very professional. And then I also used a silk shirt. But instead of silk shirt with loads of button, I went for something that was just a wrap. So I could tie it around my own waist and then tie it into a bow. Because sometimes with my dexterity of MS or I'm having a really intense day, spasms and stuff, and also my nails, that's the style shows. But I can't do buttons as well as I'd like to. I just I don't have that energy. So it eliminates that, but it still allows me to show up and be present in a way that makes me feel like when I'm talking to people or, like, around people that are hype professional, that I also feel like I fit into that scenario, but in a way that makes sense to my style and who I am, thus in what they present. And that started to make me realize like, oh, there are ways and there are clothing pieces and adaptive fashion super powerful for people because it allows you to be who you wanna be and express yourself in the way you wanna express yourself in the way you want to. And I love fabric. I'm a very much a sensitive human being. So for me, you'll see I wear like a lot of mesh, a lot of velvets, a lot of leather, a lot of lace. It's just what I love. But for a while, I couldn't find pieces that lended themselves to ease of dress. So it took a lot of research and a lot of planning. And I will say on my highest fatigue days, I do have what I call those loungewear moments. But loungewear moments where I still feel like me. So I'll have those trousers that have a little bit stretch, you know, if you feel bloated or something that don't take a lot of energy to pull on, not jeans so they're not tight. Although my amazing friend that works at Unhidden has created collections for Primark and her own brand where she has jeans where they are elasticated waist. And, actually, you can zip up to the knee. So if you're wheelchair user, there's an ease of dress, the length changes as well. So you don't have the extra materials and the extra, like, the situation where you need a little bit more length because when you sit down, your trousers go up. And if you're seated all the time, you want to still have your trousers hitting the bottom of your foot. She created an amazing collection where that was possible, but she also included loungewear and pajamas. And I think pajamas could also be a fashion moment. Because if you spend a lot of time in pajamas, which happens with a chronic illness, you still don't wanna feel like, oh, you still wanna be able to wear pajamas that make you feel good. And if they're adaptive, and if you need to stay in hospital, but you still need your IVs to happen, they have spaces where you can fit that part open and you can access them. So they have access points. So that when you're in hospital, you don't feel like you have to undress and take all your clothes off to be able to do the simple things that doctors need to be able to access to you, which I thought was super clever, but also gave you not only a little bit of privacy, but also allowed you to still feel like yourself at my most vulnerable moments. So that was really powerful for me. And there's a few other brands that I've come across like Human Beauty who have made makeups for people with disabilities, specifically in a way that we can hold them so they have wider basis. The makeup doesn't roll off the table. So you can imagine you put a lipstick down, you get to roll off side of the table, which helps everyone. If you're disabled or you've got disability, you've got so much energy, you don't wanna be, like, having to run off to your lipstick, Or you might only be able to hold the mascara a certain way. So you can actually do all the mascara like this rather than feeling that you have to do that, which means that depending on how you can bend your arm, you can still allow yourself to apply makeup and feel beautiful in a way that makes sense to you. Are we allowed to mention the brand that you just we're not promoting anything, but it's just for people who are looking some solutions to buy some adaptable makeup Yeah. Tools that we could actually. They're very, very well known. They've both been on Dragon's Den at some point, but you've got Unhidden, but they've also got a collection in Primark. And then you've got Human Beauty that has a makeup collection, and they make beautiful pieces that are easy accessible and adaptable specifically for disability and disabled people's needs. And there's many other Amazing. Adaptive fashion brands coming out now. We're in a very beautiful space where fashion universities are understanding the power of adaptive fashion, but not also the fact that it is a business in itself, and it's very lucrative if they take it on board. And they're actually teaching student in university the power of adaptive fashion and how to make their collections more adaptive. So that in the future, when they are the new designers of the next generation, they're making clothing that works for disabled people. And we know if it works for the disabled people, it works for everyone. Everyone can wear adaptive fashion. It's beautiful. They do stuff like well, they'll have hidden seams where it's literally just like buttons, like magnetic buttons that seal a seam, but it's invisible seam, so you can't see it on a pair of trousers or a shirt. But it doesn't mean that someone that's non disabled can't wear it. So they're just realizing there's, like, a powerful way of doing fashion that benefits everyone. And that's so refreshing to see, especially someone that took so much time in their life to find those pieces and collect them to make it work for me that the future might just be we're included, which is what we want for our wellness and our ease of dress. Those are excellent points, and functionality and fashion don't have to be mutually exclusive. And your tips certainly prove that. I think, you know, a lot of people change the shape as they live, you know, whether they they gain some more weight or they lose some weight, you know. So adaptive fashion, like, if you can wrap up yourself, you know, you can maybe you buy a few good quality, good fabric, breathable. Like, the the fabric is not synthetic or polyester, but it's more cotton, natural, organic. If I could call organic fabrics, are they available? There there must be some sort of Yeah. I think cotton, organic fabrics are Yeah. So I think the more natural, you may have, like, one or two pieces only. We don't need many things and follow the high fashion, although we may sometimes. Depends on your mood, how you feel, and how how, you know, what's your function to dress up for you in one or another shoe. I think the other hot topic is the shoe wear, and I could sometimes see people coming into my clinics and they wear various different shoes from flip flops to trainers. And and what what I am fascinated about is that the straps that you don't need to do your shoelaces, you know. Can you reflect a little bit on the shoe wear? And, you know, some some women like to wear heels, which is understandable. And if you can do that, perfect. If you can't, so flats, but let's let's delve a little bit on the shoe wear. This have been my absolute nightmare in transitioning with my disability and, obviously, having to use mobility aid and how my actual walk in itself has changed. I've got a lot of foot drop. So I was like a heels girl. I loved a good pair of heels, but then I realized one day, no, I can't do that because my knee would drop out and then my foot wouldn't always take the right step. So then it became slight slight little hazard to myself. So I was like, right, you have to put the heels away. There's days where maybe you can do that, but that's not every day. And then I started to get, like like, I say the kitten hill, but they're more of a block hill rather than the kitten hills. So they're technically still flat, but they kinda allowed me to feel like I was doing a little bit more than a flat. Finding adaptive footwear has still been quite a new thing, I will say, and be fully honest. Obviously, you've got places like Nike and stuff that have done adaptive footwear, and I actually have a pair of the trainers that you don't even have to there's no laces. It, like, flips open like this. You put your foot in, you put your foot down, and it closes. So they're, like, hands free footwear, which is, like, literally revolutionary, And it's so, so good and so ease, but they still haven't got enough designs in my liking. So if Nike's here listening to us, hopefully, they'll make some more for us. But flats have been good. I've been trying to buy higher quality flats, which is not easy for everybody in this current climate. But I do find, like, soft leather flats are a nicer with a good padded sole. It's that something that actually helps me walk? It's been helpful. I can't wear flip flops, so I'm not like a flip flop girlie, and I don't have a lot of friends that wear flip flops. We probably more like to wear Crocs because the strap kind of encases it around my foot, which I think for me has created less hazard. When I wore flip flops, I've actually gone completely head over and fallen over. Firstly, when I said These are the most dangerous flip flops. Like, each time I see walk somebody walk into my knees, like, oh my oh, no. No. No. No. And then now they have an answer saying, no. No. No. Doctor. Doctor. This is just for this moment. I've got to put other shoes in my car. It's like, thank god. But yeah. Because, obviously, even in a beach They're most dangerous. I can't do it. Like, it ends up falling over, and you want to because that's so beautiful sometimes, but you just there's no function in it. So I've been talking to a couple of people. Your your foot at all? No. Not support your foot. And it no. And if you have, like, a foot drop, so that's the worst. Like, you you you you can easily trip and and fall. So if you know, always consider before you're putting the flip flops on, if you have MS and you have some limb weakness, that's or or some balance coordination problems, that's really no no for you to wear the flip flops. That's the worst decision ever. Yeah. Absolutely. And I will say, Havana's do have a pair with a nice back strap, but, are elasticated, which was very helpful when you really if you must wear a pair of flip flops, at least get the pair of the back strap to keep them on your feet when you need to move because the other ones, like you just said, they have a hazard that comes with them no matter how beautiful they are. Trainers, I love. I've been trying to collect trainers that are both beautiful, but also work. So as you know, in healthcare, like, especially at conference and stuff, people like to have trainers, but there's a way of finding trainers that work in professional environment, but also work in your everyday, whether you're doing sports. And that's been quite helpful. And it can move through the world with ease. But I've had a lot of messages from people being like, right, I'm so sick of putting my dresses on and having to put trainers on. What do I do? And I'm like, look, we have to wear the flats. We have to get a good quality pair of flats for now until we we get those designers that are changing it. I'm having conversations with people. That's where a lot of my advocacy comes from. It's like, great. We've done the clothes. That's perfect. We'd love that. We're rolling with that. That's happening. Fantastic. Shoes, though. Shoes is something that everyone need. Then there's a you know, you need wide fit and non wide fit, and we need the array of sizes. But we don't have the good quality and the ease of purchase points and prices that are available right now. So how about that's our next step in these universities for the shoe designers to look at making adaptive fashion. And I have a lot of friends looking at that now. It's not as easy, but you've got a company called Open Style that was based in The US that have come to The UK for the first time. They did a cohort this year where they were looking at adaptive fashion. And currently in the V and A, you've got the disability and design exhibition. And they actually have books there, and they have well, they've made until designers change how they make shoes. They've created, like, a kit to adapt your original shoes to use them and be able to put them on with ease and move with them and ease. So that was useful and a really good insight into how we can adapt the things we currently have rather than having to go out and buy a bunch of new stuff because for a lot of disabled people, that's not possible. A lot of people's wallets are tight, and they need things that they can do with the thing they actually already have in their houses. So that's how they approach that. So that was the first step. But they're looking at how we can then encourage designers to make adaptive shoes, like you said, without lace it. There's a lot of people that are starting to make trainers wear you they look like they have laces, but they're not a stretchy thing with a Nike where you can just put your foot in, but you still have that, like, style point where you're like, well, actually, I like the look of laces, but I just can't do them. And they're creating those. It's helpful. The creativity and innovation is those techniques that really helps to develop strategies that would perhaps improve some mechanics of of the walking for people with MS. And and it's super important. It is coverable, and and I think it's gonna be a game changer for many of our listeners listening to what you just said about the brands and and what are the trainers or shoes or other clothes or makeup available for people with disabilities. So thank you for sharing that. Another important when we talk about the beauty and looks and fashion and and what what's important is, I think, the hairstyles and how to, you know, have a a good quality of the haircut that doesn't require a lot of effort every morning, as well as I would like to delve a little bit into the nail sort of function. Sometimes we have patients coming with ingress of the toenails, and that causes a lot of pain and extra problems for people to walk and mobilize, and particularly people who are more disabled, for example. So they really need to seek some advice. And if if you have a possibility to to have some manicure or pedicure on the regular basis, I think that's really important for overall wellness and and well-being. Would you agree with that? Yes. So I never used to get my nails done. I've only been getting my nails done for probably about the last five years, and it's something that I changed because I realized there was something it's a when I went to hospital, It was a quick grounding point to see my nails, and that sounds strange, but it just made me feel better about myself. No matter if my hair was messed up or if I felt like I couldn't get dressed the way I wanted to. When my nails felt good, I felt like, hey. That's still a part of me that's existing. But I make sure every month now that I go for manicure, pedicure. And it's like my only treat that I consistently keep for myself monthly. Because not only do I think it makes me feel good, there's something therapeutic about a little bit of self care for someone to take their time and for you to even take an hour to yourself where you sit there and you're not worried about anything. And you're just sitting with yourself and someone's giving you something back because we all need that. We all need that care, especially when you live with chronic illness. Like, you need to feel loved and loved, and it's not it's just a little bit of self love, which I think is so powerful for us. And it just makes you feel better because the same way when I wasn't moving around, like, I would look at my toes and be like, oh, this what's going on? Like, I I had to research for a while. Is there something connected to nails and MS? Like, how does what's going on there? Because I don't I feel like they're changing. But I realized a lot of it was probably because my self care and the level of self care I could give myself was actually changing. So then I had to go, okay. Now I need to pay for that. It's not always easy and that it's not cheap to get done. That's the one thing that I probably do more than even getting a haircut. I make sure I have that just for my own grounding. Yeah. And the hairstyle haircut needs to be convenient, that it doesn't disrupt your visual field, that you can see. A lot of people describe some double vision and blurred vision and sometimes eye pain, you know, that comes comes and goes. And you don't want anything to to block your your visual field, like something that you can actually, you know and and maybe just simple techniques like combing and washing and shaking your hair, and then it sort of it looks beautiful. You know? And and I guess that that's upon the hairstylist or hairdresser that, you know, makes you not to work every morning, you know, on your on your hairstyles when you wake up, like, it looks already okay. And I think it's it's a it comes from the hair industry, isn't it? Can you tell a little bit on this sort of hairstyles and what what to look for and what to ask when you go and see the hairdresser? So with my hairdressers, I always tell them, like, I've got curly hair, so it comes with so many levels. Right? So obviously curly hair in times itself is I sleep in my bed. You get that rubbing everyone does. So the first thing I did before even haircut was I changed one of my pillowcases to silk pillowcase. And then I do now wear, like, a head wrap, just like a silk head wrap, which stops the friction, which actually decreases the amount of cat tangle in. However, anyone that has MS, I'm listening to you, and trust me, I totally understand, that when our temperature goes up and we start getting hot fluffies, sometimes that's hard to do. So if you get really overwhelmed with temperature with MS, I would say go with the pillowcase, not the head wrap, because the head wrap traps the heat in. And actually you're going to feel horrible in the morning because then your temperature rises too much. I mean, I know what it's like. I mean, you get too much temperature rising with them. So I'd always go with the pillowcase, not the head wrap. And then when I go to the salon, I've got look, I have curly hair. Obviously, it dries out quite quickly, especially when it gets washed. I need an ease of cut. So I'd tell them a little bit about my lifestyle. I'd I'd have to be honest, and that takes a level of honesty. Like, this is what I do. I can only wash my hair once a week. What can I do? What products can I use that are easy to use? I have one day a week I can do this. How do I set myself up for the rest of the days? Obviously, some people need to wash their hair more. We do have dry shampoo in that. That's helpful. If you can only give yourself a spritz and a brush, that's always helpful to have. But I just tell them what my day to day life's like. Do I go to the gym? What kind of profession I work in? Where I want my hair? So if I want a shorter style with an above shoulder style that's workable with ease, I tend to stay away from bangs or fringes. Because if I can't do stuff, it grows out too quickly, then my already rapidly changing eyesight, it's not helpful when you've got something like your face that you can't use. And I just let them know, like, what I know about my hair because I didn't know a lot of my hair. Some of us know so much about our hair textures and what we need, and others don't. And I stopped dyeing my hair different colors. Before Emma, my hair was like red and black, orange and black, red, green and black. And I realized what happened was it was coming up very quickly. And then I felt like I looked a certain kind of way. I didn't feel as beautiful as I could because my hair washed out or my roots were coming through and that was just changing how I felt about myself. So I more like to go with more natural tones because it allows me to just feel like it's less maintenance. It's also less money to keep my hair in a natural tone. So that was also very helpful. So I would just my list of what I want what I like, the things and, like, the style that actually gravitate to naturally without my MS. Then I would make sure I had the foundations of, like, pillowcases that ease day to day so that less brushing, less tangling, not helpful. Let them know what my realistic wash pan looks like currently to my hairdresser. And then with them, create a plan of ease of what's the best stuff for me to go for, the amount of energy I have, and amount of maintenance I can uptake. Because some people can't get to the hairdresser every four weeks. Some people can get to every you might only go to every twenty weeks. But I was honest with that. They'd be like, this is what I need. I need something that can grow out in a way that still works until I can next come with you, whether that's where I can afford it or I have the energy to get there. And that was how I started that process. And, also, change your hairdresser if they can't do that for you. Please think about finding a hairdresser that works for you because it's the back and forth relationship. And, Dafar, I think that that's really helpful tips that you just expressed, and I can only echo and say having dry hair of mine. So the less you wash, the the less dry and more moisturized the hair is, and you can actually train your hair not to wash every day. You can Google and look into a curly hair method and identify certain products and how to train your hair that it's not greasy, like, that you don't need to wash it. So there is different approaches these days. And try to avoid parabens and sulfates because it strips your your hair. It makes it even drier, fragile. You know, you start losing your hair. So it's a horrible thing. Nothing against the head and shoulder, but watch the labels and make sure that there are no parabens and sulfates in it. Yeah. So lastly, the fashion industry is ever evolving. How do you see its role in promoting inclusivity for people with disabilities, and what changes would would would you like to see to foster this? So fashion industry has a massive role in creating, like, adaptive fashion and representation for disabled people. We have some top brands that we all know, that we all love. There's a lot of advertising. Advertising is a powerful tool. We all know that. It creates it in a way that we see it all the time. We have social media now. Advertising is like, we can't get away from it. And essentially, by actually having disabled people in these advertisements and actually having us part of campaign helps people understand, a, we exist. And actually, there was a market to create fashion for disabled people. It also allows disabled people to feel like they deserve beautiful, amazing fashion to be created for them. And it means that the wider world, the new designers, the people coming up, people that are looking at fashion, children that are like, oh, I love this designer because we all looked at fashion when we was kids, right, looked in glossy magazines. We looked at things that we did runway shows. And if there's no representation there, people can't see themselves in those spaces and those industries. And they don't feel like they have to constantly push through barriers and walls. Like, it's got a constant fight to be seen or to be heard in the fashion industry as a disabled person. We have a few top models that have disabilities, but even then, if you go into their Instagram and you hear them speak and they still to this day, find it really hard to get booked on jobs. And often when they do, they are booked by people that don't have adaptive fashion in the collection. It's more you're addressing disabled people in non adaptive fashion to and it feels like more like tokenism inclusivity rather than real inclusivity. Tommy Hilfiger made an amazing leap in fashion. He was the one of the first artists to create an amazing adaptive collection of pieces from his standard collections that looked exactly like everything else but had adaptive features. And that's the first designer to really go, okay. I care, and I wanna change this. But we need more designers to do that. We've got Victoria's Secret that have done underwear, which is fantastic. But we need more people to come on board, and we used to do it consistently and not for it to look like it's a one time moment. One campaign, one disabled people, one look. And realize that not all the same people are wheelchair users. Disability comes in many shapes and sizes and many genders and backgrounds. Some people use sticks and walking aids like this. Some people use rotators. Some people use wheelchairs. So we need to consider the fashion industry can consider when they're showing disability that actually disability is a full circle. It's not just one look, and to actually change how and who they're showing you in a disabled sphere. That's very helpful. That's helpful for people to see themselves. And it also means that the same people also might decide to become the next level of designers because they're realizing the industry itself is being more inclusive, which makes you feel like, actually, if I do this, there will be amendments and reasonable adjustments for me to be the best next disabled fashion designer rather than feeling like you're trying to fight against an industry that already has a level of toxicity in it. I, as a stylist, came out of that space because there was no adaption around, like, time frames and adjustments to be able to do my job. And for me, my disability is not as severe as other people's because I only use a stick. But I also had to pick up loads of collections and times six AM mornings don't always work for someone with MS. So we need to look at industry as a whole. We need to bring disabled people in there as people that you speak to to look at the way that we can change it. You've got an amazing Irish lady called Sinead Burke who does that with her brand currently. She's working with Vogue Business. She's working with top designers, and she is fighting to push for more adaptive, inclusive, disabled fashion and representation inside that. We need more people like her that also showing, hey. We have money. We want it, but no one's creating it. And not all of us can create it ourselves. What do you need to know from us? How can we help you help us? And then also then fill that through to actual imagery and stuff so the wider world also see the beauty and the benefit of having disabled people in the industry. Wonderful. Roxy, I love your sticks, and they like accessories to your whole look and style. So where do you get all these fascinating sticks? Right? Oh my god. This is red today. Right? So but you have different colors and different shapes. This is Amazing. Red. I don't know if this is I'm gonna pick up this, but, like, bubbles going through it. Yeah. It's called the Moulin Root Stick. I this particular one is from a brand called Neoworks, and they're perspex sticks, and they come with different ferrules on the bottom. They their amount of sticks they have is unprecedented. There's no way someone can't find a colorful stick on there that doesn't work for them, and they come with different handles. This is a Snoopy handle, but they have curved handles and they have straight handles. And if you have, like, a issue holding something that's hard, they do do silicone inserts to go over it, so you've got a bit of a softer pad. They've even got light up stick. It's actually quite incredible. Glitter sticks. They do customs. It's fantastic. But then I also have some wooden sticks that I absolutely love by another brand, and they have, like, crow faces. And I've got, like, a skull, and it's very Alexander McQueen. And you can actually twist the heads off and change the different handles to match your outfit if you're very like me. I do like to match things to what I'm wearing. It's just probably just how I like to style. I feel like styling is a very powerful tool, especially if you only have basics in clothing, and that's what you wanna wear, but you want to feel elevated. Having a beautiful stick or something that's an accessory also makes you feel like you are really, you know, showing an outfit, but not having to spend loads of money. And now at this point, people actually, like, message me to be like, hi. I've made a stick, and I think you'd love it. Or I've got some beautiful rollers, like, from Biarco and stuff that are absolutely gorgeous, come in multiple colors, super functional, very, very lightweight because having things that heavy is not my fault anymore. Yeah. And that's really helpful. Social media, Instagram has been an amazing space for me to find fit. If you put mobility aids in, the amount of mobility aids come up now is unprecedented. It's incredible. It was not like that a few years ago. And they're worldwide. It's just I don't know. I think it's the best adaptive fashion tool that's come out of it. Even wheelchairs now changing and being totally amazing. You've got, like, wheelchair covers for the wheels that are, like, colorful and beautiful. And, yeah, it's just there's no limit to beautiful, fashionable mobility aids currently. Wonderful. It's it's an asset that you use for blistering your function and mobility. Quite often, people say, oh, I don't want to start using stick because I feel like I'm getting more disabled and more progressively worse. But actually, stick gives you a lot of more ways of function and walk and do things for yourself. So so it's it's really a adjunct adjunctive therapy and and the beauty assets that some people who don't even require to use a stick now, they're gonna start using after this presentation of various different shapes and colors and styles that are available and watch on the media and Instagram, and look for the right one for you that really will brighten your day and uplift your spirits and make you feel better overall. So we all and we both now today with Roxy would like you to be beautiful, to be inspired, to be confident, and and start looking after yourself from the day one when you are given diagnosis or even before the diagnosis. The more you establish your routine, your behavior, the better you're gonna feel in the long run. MS is not a sprint, it's a marathon. It's a long journey, so you really want to set the scene that you're gonna feel good about yourself. So, Roxy, your powerful vision for the future of fashion is is extraordinary. I really enjoyed every second spent today, which is probably continue forever and all day long. Your contributions are certainly paving the way for a more inclusive industry. And and to every listener, please do look after yourself. Be beautiful. Try to make your day with simple behavior, simple tasks that makes you feel uplifted, inspired. And as we wrap up, I want to thank you, Roxy, for such an enlightening conversation. Your expertise and experiences and expression have not only educated us, but also inspired us to embrace our individualities, our personalities, and who we are to live this life no matter the the the disability or functional dysfunction. So to our listeners, thank you for tuning in. And remember that fashion is for everyone. Nobody's excluded, and and it is an expression who we are, and there are no limits to how we can express ourselves. And disability is not a barrier for this. So be beautiful, everyone. And, Roxy, where everyone could find you to get inspired to get to get more views and insights of your life and who you are? So I have an Instagram, which is the multiple sclerosis fashionista. And I also have a website which is www.multiplesclerosisfashionista.com. You can send me an email or message. I'm more as happy to help. Do reach out. I love having more and more people and together. Hopefully, we can be more stylist, more fashionable, and more amazing with Emma. So thank you. Thank you, Roxy. So don't forget to follow us on the Be Well with MS, www.bewellwithms.com for more episodes. And until next time, stay well, be well, and be empowered. Be beautiful. Bye for now. So let's buzz online now in the meantime, and have a merry Christmas and happy New Year. Thank you. And enjoy enjoy yourself. So, yeah, be beautiful. You too. As you are. Stay sparkle. Thank you. Bye bye.

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12 November, 2025 Easy Explained MS by Dr Agne Straukiene

Advancements in MS Treatments 2025 ECTRIMS

Join Dr. Agne Straukiene, a neurologist specialising in Multiple Sclerosis, as she unveils ground-breaking treatments discussed at the ECTRIMS 2025 conference. Discover how BTK inhibitors like Tolebrutinib, Evobrutinib, Orelabrutinib, Remibrutinib, and Fenebrutinib could revolutionize MS care by targeting both B cells and brain cells to reduce inflammation and progression. Learn about #Frexalimab's novel mechanism and promising trial results, the potential of combining Clemastine and Metformin for myelin repair, and remarkable long-term outcomes of autologous haematopoietic stem cell transplantation. Explore the exciting advent of CART cell therapy poised to change the future of MS treatment.

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Hi, I'm doctor Agni Strakiena, a neurologist specializing in multiple sclerosis. Today, I'm excited to share some advancements in MS treatments from the Ektrims twenty twenty five conference. Have you ever wondered how immune cells react to multiple sclerosis treatments? Today, I'll take you on a fascinating animated journey into the world of cells, how they behave, respond, and transform with therapy. Let's discuss about one of the most talked about treatment topics at Ektrym's twenty twenty five, BTK inhibitors, or Bruton's tyrosine kinase inhibitors. These are oral drugs that may change the future of MS care. So how they work in our bodies, they calm the immune system especially overactive b cells that play a big role in MS. They reach into the brain and spinal cord, where they may help reduce chronic active inflammation, something older treatments can't always target. So these drugs could work both in the bloodstream and inside the central nervous system, which is big news. At Ektrims twenty twenty five, several BTK inhibitors were discussed. Here are the main ones. On, Tolabrutinib is one of the most advanced BTK inhibitors. What makes it special is that it crosses the blood brain barrier very well, meaning it can act directly inside the central nervous system where inflammation and nerve damage occur. In clinical trials, tolebrutinib reduced new brain lesions and showed encouraging signs of slowing disability progression. It did face some safety concerns in the past due to liver changes, but trials have now resumed at lower, safer doses with improved monitoring. Two, evobrutinib has shown sustained benefits over time, fewer relapses and fewer MRI lesions. It acts on both b cells and brain immune cells known as microglia, which are thought to contribute to progression even when relapses stop. Most side effects were mild, like headache, diarrhea, and small changes in liver tests. Three, orelobrutinib also penetrates the brain well and works selectively, meaning it targets only what it needs to. Early results showed fewer new inflammatory lesions with generally good tolerance, some mild nausea, infections, or minor liver changes. Four, rimebrutinib stands out for its twice daily dosing and quick action. It's been shown to reduce relapses and new MRI lesions, making it a convenient and effective oral option. Reported side effects were mild, mainly headache, rash, and fatigue. Five. Phenibrutinib takes a broader approach. It doesn't just act on b cells, it also targets myeloid lineage cells, which include microglia, the brain's resident immune cells. You can think of microglia as the brain's internal housekeepers. They clean up damage, but when they become overactive, they can fuel ongoing chronic active or smoldering inflammation. By calming these cells, fenibrutinib could help prevent silent progression in multiple sclerosis, not just relapses. This dual action on both b cells and microglia makes fenibrutinib one of the most promising BTK inhibitors being studied, especially for progressive MS. It's also been generally well tolerated, with mild infections and headaches reported. Unlike many current MS treatments that suppress the immune system broadly, BTK inhibitors may be more targeted. They could reduce relapses, prevent new brain lesions, slow down silent progression, offer oral dosing with fewer clinic visits, and possibly help with chronic active MS, the slow burning type that doesn't show up as clear relapses. These drugs are still being studied, but we're moving closer to having options that work deep in the brain something we've never had before. BTK inhibitors generally appear safe, but because they act on the immune system, we still watch for liver changes, mild infections, headaches and gastrointestinal symptoms. Long term safety is still being studied. I would like to take your attention on Frexelumab was another spotlight treatment at Ectrem's twenty twenty five, offering a completely new way of calming down the immune system in multiple sclerosis. Unlike many treatments that work broadly, frexelomab targets a specific molecule called CD 40 l, an essential signal that activates immune cells during inflammation. By blocking this signal, frexolumab helps reduce the autoimmune attack on the brain and spinal cord. In clinical trials, it showed impressive reductions in new brain lesions and signs of ongoing inflammation by over eighty five percent in some patients. Importantly, it's a non depleting therapy, meaning it modulates the immune system without wiping it out entirely. That could mean fewer infections and potentially a better safety profile. Side effects were generally mild, with headaches and minor infusion reactions being the most common. As more results emerge, frexelimab is shaping up to be a promising option for people looking for effective targeted control of their multiple sclerosis with a lower impact on their immune defenses. Interestingly, researchers shared promising findings from a trial combining two well known medications, Chlamastine, an antihistamine and Metformin, a diabetes drug with regenerative properties. Together, these two medications appear to stimulate the body's own oligodendrocytes, the cells responsible for creating new myelin, the protective coating around nerves showing potential despite still being in experimental stages. But what really got attention was their effect on the optic nerve, which is often affected early in MS. Participants who received the combination showed measurable improvement in visual evoked potentials or VEPs. This test tracks how quickly signals travel from the eye to the brain. In MS, that signal is often delayed due to demyelination. After treatment, these signal delays improved, suggesting actual repair of damaged myelin in the optic pathways. One of the most striking updates at Ektrim's 2025 came from the long term outcomes of stem cell therapy, specifically autologous hematopoietic stem cell transplantation for people with aggressive forms of multiple sclerosis. Compared to standard disease modifying treatments, stem cell therapy showed a dramatic reduction in disability progression. After ten years, only ten percent of patients treated with stem cells experienced worsening disability from progression compared to nearly fifty percent in those on conventional treatment. Even relapses were nearly eliminated, only seven percent had a relapse over ten years versus eighty one percent in the control group. Importantly, AHSCT almost completely prevented new disability that accumulated independently of relapses. It also kept more people in a no evidence of disease activity state called NEDA three for years. The treatment was particularly effective in younger patients with lower disability scores at baseline. There were no deaths or cases of cancer during follow-up, although a small percentage developed autoimmune disorders. This data reinforces that for the right patients, AHSCT is not just an experimental option, it's a powerful intervention that can halt inflammation, prevent progression, and even potentially change the trajectory of the disease. But identifying who might benefit most based on age, baseline disability, and risk markers will be key to offering this treatment earlier and safely. One of the most cutting edge treatments discussed at Ektrims twenty twenty five was CAR T cell therapy, a breakthrough approach already making waves in cancer, now being explored in multiple sclerosis. CAR stands for chimeric antigen receptor. In this therapy, a person's own immune cells are taken out, reprogrammed in a lab to specifically target the b cells that drive MS inflammation, and then infused back into the body. In a small early phase trial conducted at Stanford University, this therapy was tested in people with progressive multiple sclerosis. It involves modifying a patient's own immune cells to eliminate b cells that are believed to drive disease progression. The results were encouraging. The treatment was well tolerated with only one case of mild cytokine release syndrome and one case of temporary neurological side effects. Both were transient. By one month after infusion, b cells in the blood were completely depleted. By six months, the immune system began to reconstitute, and over 90% of the b cells that returned were of a naive type, not memory cells that tend to cause inflammation in multiple sclerosis. These advancements signify a profound shift towards more effective long term MS management. I hope you enjoyed this imaginary world of immune cells and new advanced treatments in MS. Stay informed and share this vital information with others who could benefit. As you can see, there is hope for better tomorrow, and don't forget to always be well.

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25 October, 2025 Easy Explained MS by Dr Agne Straukiene

Botox in MS for Aesthetics

In this episode, we delve into the use of Botox for individuals with Multiple Sclerosis (MS), focusing on its benefits for both therapeutic and aesthetic purposes. We discuss how Botox can help manage MS symptoms like muscle spasticity and facial muscle issues while also considering its cosmetic applications to improve appearance and self-confidence. Key points include the importance of coordinating Botox with existing MS treatments, selecting appropriate injection sites, and closely monitoring potential side effects. Ethical considerations and the psychological impact of aesthetic treatments in MS patients are also examined.

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Welcome to our exploration of Botox in multiple sclerosis aesthetics. We'll examine how this treatment option intersects with the complex needs of individuals living with multiple sclerosis. Multiple sclerosis is an autoimmune condition that affects the central nervous system causing various symptoms including muscle spasticity, tremors, and facial muscle issues. These physical manifestations can sometimes affect facial expressions and appearance. Botox or botulinum toxin has long been used therapeutically in MS to manage muscle spasticity but its aesthetic application offers additional benefits for some patients who wish to address visible signs of their condition or aging. When considering Botox for aesthetic purposes in MS patients, medical professionals must carefully evaluate several factors. The treatment must be coordinated with existing MS medications and therapies. The injection sites need to be carefully selected taking into account areas affected by ms symptoms. Additionally, the dosing may need to be adjusted compared to standard aesthetic treatments as ms patients might respond differently to the medication. The risks and potential complications require special attention. While Botox is generally safe, MS patients might experience different side effects or reactions compared to the general population. Common side effects like temporary weakness or bruising at injection sites need to be monitored more closely it's crucial for patients to work with health care providers who understand both aesthetic medicine and MS management to ensure safe treatment planning. The psychological impact of aesthetic treatments in MS patients is significant. Many individuals with MS experience changes in their appearance due to their condition or its treatments. Aesthetic interventions like Botox can help improve self confidence and quality of life. However, it's important to maintain realistic expectations and understand that these treatments are optional and should be part of a comprehensive approach to managing MS. Ethical considerations also come into play when discussing aesthetic treatments for individuals with chronic conditions. Health care providers must ensure that patients are making informed decisions free from external pressure. The focus should be on enhancing well-being rather than conforming to societal beauty standards. It's essential to discuss both the benefits and limitations of aesthetic treatments in the context of overall MS management. As we conclude it's clear that the use of Botox for aesthetics in MS patients requires a thoughtful individualized approach. While it can offer benefits beyond cosmetic enhancement, careful consideration of medical, psychological, and ethical factors is essential. Always consult with health care providers who understand both MS and aesthetic medicine to determine if this treatment aligns with your overall health goals and MS management plan.

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