Hi guys!! This channel is about my journey through Red Skin Syndrome (RSS), Topical Steroid Withdrawal (TSW) and my epic adventure shooting both of my documentaries, Preventable: Protecting Our Largest Organ, and Still Preventable (which should be completely by Fall 2024).
Please please rename this amazing video. If people are suffering from TSW they are unlikely to find it with your title preventable documentary. I worked with Kelly before she became so poorly. Word association is so important and anyone searching for help and advice on TSW may miss this x
@StephenJarratt hi Stephen. This has become a brand in a sense. I would never be able to change the name of the documentary. I do agree about word association, but this title is what I chose because it's a truth about TSW. x
Hi Briana, Thank you for everything you do to highlight tsw you are so brave and inspiring! I just wanted to ask if you've heared of Rinvoq i have tried cyclosporine and it helped a bit but it really effected my renal function and gave me migraines and nausea. I then tried dupixent and it hasnt worked for me at all. The next step is rinvoaq. I don't see much on social media about it. Im desperate as I'm about to lose my job plus i have a five year old who just sees mummy sick and housebound. I'm in the UK and will be signing both petitions 😊
I’ve been on topicals for several months and am problems are just spreading. I’m so glad I saw this video now, before it gets any worse. Would love to hear more about Dupixant. Also, just started using Marin Skincare Cream. Does anyone have experience with it? It has really good reviews. Good luck and good health to you. Thank you for making this video.
Welcome back Brie! Thought we lost you there for second 😋Just wanted to say that although you may not feel like it, you are amazing! If only your skin could be as positive as your personality. Would love to hear more about your uni life and any other film projects you're working on too if you can muster the energy. Quick q about your Dupixent journey if that's ok...how long were you on it before started suffering with the eye pain? I've just crossed the one year mark myself...and getting slightly worried the shit is going to hit the fan soon. All the best and like your Spiderman cuddly in the background - hang in there!
Hi! Such a sweet, and cherished, message. Am super overwhelmed with Uni and editing of the Still Preventable documentary (doing the work of a team as one solo person atm 😅), but will hopefully update soon. If you have insta, I do more smaller update stories there! As for Dupixent, it was exactly 11 months in I had issues start. It's so different for everyone though. I know people who have been on it for years and minimal (if any) issues. If it's working for you, fabbbb!
@@BrianaBanosPreventable Understood, sounds like you've got your hands full! I'm too much of an old man for insta 👴, but I wish you the very best. So sorry it didn't work out for you :( Even if things go down hill for me, i'll always be incredible thankful for the holiday from TSW I've had; Going swimming with my son, being able to have the lights on and look in a mirror, not thinking about what colours can I wear so flakes don't show up...such little things, but it makes a universe of difference to those of us who know. Thanks again for everything you do. You are a hero Briana Banos, never forget it!
oh wow, how good to see you here. I must confess that I stopped following a lot of tsw fighters and survivors after I got better, but every time this issue comes up in conversation, your name and documentary is the first thing I refer people too. in fact I just did, on a random video that popped up on my recommended page hahaaha («What happened to Joana Ceddia?», on Mina Speaks' channel). happy to see you are still fighting strong, and spreading the word on tsw!! wishing you all the best!!
@@1Dsadiaafzal Hey! So sorry for the late reply (I have no notifications on my phone). Wells it's different for everyone. The sooner you convince yourself that there's no miracle cream or step-by-step on what to do, the better. As cheesy as it may sound: listen to your own body. I can tell you however how my journey went: I joined some Facebook groups, followed some other tsw fighters on Instagram to get inspired, but after reading many of their experiments, I came to the conclusion that what works for them, doesn't necessarily work for me (and others) - and the other way around (plus, it was getting too expensive ordering so much stuff people suggested ahahah). So I decided to take matters into my own hand and made several medical appointments with various dermatologists, until I found one who wouldn't judge me as much as others did, and that would make me feel - at least - heard. And even though she was still skeptical - at least she didn't disrespect me, by rolling her eyes or saying "I'm the one with the medical degree, not you" like everyone else did before her. So, I told her all about tsw, and asked her to give me a weaning-off regime (from my topical steroids). Many say, at this point, I could have done that by myself, but even though I felt deceived by them (I started using it when I was a BABY, up until my late 20s), I still wanted to be followed by a professional in case anything bad happened (like blood infections, etc). I followed the plan, completed it and then started experimenting with food - I would eat something, take note, wait for 24/48 hours to see if there was any reaction, and I would cross of my list if it did. Now, this is very dangerous and I do not recommend doing it by yourself. Try to look for a nutritionist, because during that time I ended up with a very small list of things I could eat, and was severely malnourished (and you need to be well in order to fight the physical AND MENTAL battle ahead). I also experienced some creams in the beginning (and dif. quantities - I would start applying in small patches, endure the itch and see it if in a couple of days my body was used to it or not). What worked for me was Cerave (the moisturising one). After a few months of applying the cream, skin clearing off and then seeing everything coming back (it's a circle, it will always happen), I decided to change a little and I would only apply cream on patches that were just starting to itch, and the other skin patches that were already oozing*, I would apply Betadine (Povidone-iodine, the drying solution). (Continue on the next comment)
Part 2: * Not sure if "oozing" is the right word. English is not my mother tongue, but I think I was able to describe it as best as I could hahaha. I would apply betadine EVERYWHERE ahahah I would bring it with me, together with some disinfectant hand gel, some sterilised cotton pads and my cream. I looked insane at work but I didn't mind because I felt better than when I was always using topical steroids and was scratching myself like crazy. Anyway, that's it. I did that until my skin cleared. I also changed my shampoos, body soap, I would wear only cotton clothes, kept my space free of dust (as much as possible) and wore a mask outside and had always hand sanitizer with me, before COVID 🤡 (some people joked about it later, and said I predicted the future). Every now and then I would try again some of the food my body reacted in the beginning and saw some improvements. While other things I could eat, ended up going to the "don't eat" list. But the bottom line is: keep experimenting, don't exclude anything for a long time, try to keep your routine as much as possible, go outside, don't be afraid to ask for help, cry (cry all you want and scratch yourself every once in a while, f*ck it. Tomorrow you can always restart everything), sleep well, eat and drink lots of water. Don't get isolated, get some sun as well, and don't feel guilty to ask for off days or days you could work from home (talk to your boss about it and see if it's possible to find some kind of compromise). But DO NOT stop living life and DO NOT give up. Like I said: it's a vicious circle, your body will protest A LOT (it's asking for the drug), but you (or the person you are taking care of) will see improvements. And don't compare your journey to others. Mine was actually "fast" compared to many people in the community, but that doesn't mean what I did is the solution/the right thing everyone should do. It is what worked for me, and due to my country's weather (that also counts), probably genetics, and obviously some privilege to be able to go to the doctor, ask for days off and so on. So do what's best for you, go at your own pace, and everything will be fine. ✨
Very aware of CAP therapy xx it will be discussed in my next TSW documentary I am currently editing. I am a masters student atm and do not have the money or time tp dedicate to CAP unfortunately.
What is your documentary called? I would love to talk to your privately about your skin journey, I am on Cyclo at the moment and have wishes to travel etc... Would you love to hear from you.
Hi Brionny! My documentary is called Preventable. It's here on the RU-vid channel =) you'll be able to hear all about my skin journey there. I also have many videos on here and highlight reels on my Instagram speaking about my journey xx I do hope you get to travel!!!
You’re so brave !!! I have tears watching this !! I am going through TSW . Having had severe eczema all my life and using steriods on and off my whole life my skin is finished. My whole body has been going through hell, it’s horrendous I wish everyone knew about all these creams and the hell!!! I’m so sorry to anyone going through this!! Sending love and healing ❤️❤️❤️❤️
Sweet, Beautiful, Brave Warrior Briana, how are you today? I am still ready to advocate, but I am going in a different direction...to start through my church. Thank God we made it through, right? I am 95% healed; my hands and feet are the last, but they are clear enough to wear sandals this year. It has taken me approximately 5 years. OMG So...I know things are "in the works" still on awareness and all. But my fear is this. Before knowing ANY of THIS stuff...I did whatever it took to get my steroid creams when I used them! Who is in that boat? How do we get to those people?
Hey lovely? Do you have insta? I have a highlight reel where you can see updates. I desperately need to do one here and will endeavor soon to do so. I'm doing a lot better, but my neck and arms are very much a trouble area. I have slight issues on hands too
Thank you for making this documentary. We discovered my son was suffering TSA after seeing this documentary and so he stopped all topicals and went into TSW. He is almost 16 months in and still suffering but I do not like to imagine what it would be like if we had not found this video or the ITSAN website.
TSW is one of the most isolating things to go through, although heartbreaking to see others going through the same, it also gave me hope and inspiration for the future. To be so vulnerable and open with the world to make others aware of this cruel ordeal is admirable beyond words. This documentary opened to door to allow me to meet the most incredible friends who have been to hell and back! 💜
I think this documentary may have saved me from TSW. My eczema was getting worse and I had just been prescribed a huge tub of steroids and began applying it rigorously. When I watched Preventable, I knew I needed to change course asap. I believe I avoided TSW because of you, Bri. Thank you ❤
I'm trying to find time to do another update x not been able to take a shot since Oct 30th. The eye issues and sudden eye and neck flaring was too much. I cant take cyclo. It kills my kidneys.
Hey Briana I find adtralza is helpful for TSW but avoids the facial flares and eye issues of dupixent. It's not perfect but it's definitely less harsh on the side effect side. I've notice I still have some flares with season changes and after covid infection. Stay strong Briana you're a huge inspiration. Thank you for bringing light to this issue and being so transparent it's a huge support for others dealing with this awful condition.
Sending you so much love Bri, I’ve been a silent follower for two years now since I started TSW and you’ve been such a comfort to me❤I totally empathize with everything you are feeling right now and all the existential stress that occurs when flares happen even when they’re “not supposed to”. It’s so agonizing and unfair. I am confident this is just another bump in the road for you but no matter what happens with you and dupixent try to remember that there are other options in case you do have to stop. I had to come off last year abruptly after a terrible reaction after over a year of thinking it was my saving grace. As stressful as it was I was able to do a flush out period and get on Adbry (another biological i’m sure you know, just interacts with your immune system a little less) and that’s really helped me for the time being. It’s such a fear of mine as well that one day everything will stop working and I’ll end up back at square one, and as tough as it is to let that fear go, i know you know finding a way to is pivotal to living a real life. In terms of financials, you have done so much for this community and spreading awareness I think a lot of us wouldn’t mind giving back if you made a gofundme to get you through this time. You’ve accomplished so much throughout this journey and have been such a positive force of inspiration to every soul you’ve touched going through this, please remember that. Wishing you the best and sending lots of love and healing thoughts your way🩵
Hello Briana, I’ve followed your story for a while now and I just want to say how beautiful you are with or without your eczema flare. You are such a strong charismatic woman. Wishing you brighter days ahead…💙 💙 💙
@@BrianaBanosPreventable you will get out of this cycle once and for all. This is your last flair I believe. I know how difficult this situation is and non can understand except you. I my self struggled to make people around me understand what I was feeling though it was not showing much outward. I believe in the super power GOD who made our body and made it well. HE will cure you please believe in your body it can heal on its own. I am doing cold turkey for 2 years now. My love to you my dear.
