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Пікірлер
@Susie-uv3re 10 сағат бұрын
The petitions are now closed 😞
@BrianaBanosPreventable 10 сағат бұрын
@Susie-uv3re yes, they got closed before the election, sadly. It was very disappointing
@Susie-uv3re 10 сағат бұрын
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 😊
@elsalennartsson4295 7 күн бұрын
Thank you for this! It meant so much watching ❤️🩹
@BrianaBanosPreventable 7 күн бұрын
@@elsalennartsson4295 I'm so glad it helps!
@anyaflagg8258 10 күн бұрын
Have you tried black seed oil?
@BrianaBanosPreventable 10 күн бұрын
@@anyaflagg8258 a very long time ago.
@kapurkay 23 күн бұрын
Have you tried CBD oil?
@BrianaBanosPreventable 23 күн бұрын
Internally and on the skin x
@TaniushaBarbie Ай бұрын
Hi Briana. I'm currently going through TSW. May I ask for how long were you using steroids before going into TSW?
@BrianaBanosPreventable Ай бұрын
I only used it for about 2.5 years in adult life, and a small (not even documented well) amount throughout childhood/teens
@samantharodriguez9446 Ай бұрын
Thank you for this
@alexanderfern488 Ай бұрын
Just know, you are beautiful, your soul is beautiful, and us tsw/eczema people, us season sympathisers, are all here with you! <3
@BrianaBanosPreventable Ай бұрын
So touched. Thank you Alex
@jeaninelouks5530 Ай бұрын
Mineral cell salts esp silica. God bless you. 47 yrs fighting it and month 114 since debilitated, but I'm still here!
@nancygregg5108 2 ай бұрын
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.
@bahbahbah605 2 ай бұрын
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!
@BrianaBanosPreventable 2 ай бұрын
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!
@bahbahbah605 2 ай бұрын
@@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!
@BrianaBanosPreventable 2 ай бұрын
@@bahbahbah605 it truly does make a WORLD of difference!
@lilincoopr 2 ай бұрын
Dope content, as always, fam!! Sending you some California love! 💕🫶🏽✨
@BrianaBanosPreventable 2 ай бұрын
Thanks lovely!! Hope you are well!
@DoIReallyHaveTo 2 ай бұрын
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!!
@BrianaBanosPreventable 2 ай бұрын
Thank you for still sharing! Spreading awareness helps so much. Glad you are doing better!!
@DoIReallyHaveTo 2 ай бұрын
@@BrianaBanosPreventable much better. and I can't thank you and the rest of the community enough for all the support provided 5 or so years ago. 💖
@louisequadrelli7961 2 ай бұрын
Are you finding your skin is better or worse in Scotland? Im finding the environment plays a massive role in my flares
@BrianaBanosPreventable 2 ай бұрын
As I've never lived in a cold climate before, it totally plays a role x
@DoIReallyHaveTo 2 ай бұрын
totally. while I was going though my tsw, I had a week of total relieve when I went on a trip to the Azores
@Scorch2534 2 ай бұрын
CAP Therapy. Please, please, please look into and research that. Cold Atmospheric Plasma.
@BrianaBanosPreventable 2 ай бұрын
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.
@brionnyvaus4515 2 ай бұрын
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.
@BrianaBanosPreventable 2 ай бұрын
Hi Brionny! My documentary is called Preventable. It's here on the KZfaq 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!!!
@janelleharris8470 2 ай бұрын
Love you and it was so fun spending time with your mama! I see where you get your beautiful heart 💜
@BrianaBanosPreventable 2 ай бұрын
I'm so glad she got to meet everyone. Slightly jealous!!
@BrianaBanosPreventable 2 ай бұрын
Sending a big hug!!!
@tonaruch8623 3 ай бұрын
Excited to hear from you.
@BrianaBanosPreventable 2 ай бұрын
and you :) Hope you are well.
@rochajay720 3 ай бұрын
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 ❤️❤️❤️❤️
@BrianaBanosPreventable 3 ай бұрын
Love right back!
@rochajay720 3 ай бұрын
❤❤
@nah6730 3 ай бұрын
Dude at 19:50 is a complete ass
@h3bysuzanne184 3 ай бұрын
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?
@BrianaBanosPreventable 3 ай бұрын
Love hearing this 💓 thank you for wishing to advocate and share with your church!
@nhtathinfbntb2746 4 ай бұрын
Hey Bri, you better now? Im 42 months and my fingers flared and got infected.
@BrianaBanosPreventable 4 ай бұрын
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
@hanadabdi1757 4 ай бұрын
its the food you eat.
@user-vp2bj5lk6c 5 ай бұрын
2:50, answer :yes
@user-vp2bj5lk6c 5 ай бұрын
💙❤
@alexianemusic 5 ай бұрын
Love you Bri. Thank you. So much.
@BrianaBanosPreventable 5 ай бұрын
Thank you my dear!!!!
@billmuno7191 5 ай бұрын
Xiu-Min Li, M.D she can help
@BrianaBanosPreventable 5 ай бұрын
Hi. I'm the creator of Preventable, the documentary on TSW where I interview her. Very aware of who she is x
@jstaff08 6 ай бұрын
I’m so grateful for you made this Briana
@GrayCatChicago1 6 ай бұрын
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.
@BrianaBanosPreventable 6 ай бұрын
Thank you for sharing your journey 🙏🏼 sending you and your son a massive hug.
@lozm4877 6 ай бұрын
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! 💜
@BrianaBanosPreventable 6 ай бұрын
Thank you for sharing, love!
@amandacampbell9424 6 ай бұрын
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 ❤
@BrianaBanosPreventable 6 ай бұрын
Thank you so much for sharing, Amanda xx this means a lot to hear
@kellja5012 6 ай бұрын
This is brilliant. So well done, informative and accurate. I’m going through TSW myself and this has been an invaluable resource. Thank you, Briana!
@BrianaBanosPreventable 6 ай бұрын
Thank you dear for sharing x
@Paul-qq7mh 7 ай бұрын
Dupixent only worked for me for 6 months then i got all these weird viral infections so I'm back on cyclosporine and antibiotics right now. .
@BrianaBanosPreventable 7 ай бұрын
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.
@Paul-qq7mh 6 ай бұрын
@@BrianaBanosPreventable Yep I've been taking taking cyclo for about for about 4 years now off and on and my kidneys are not liking it.
@Johnnymahon218 7 ай бұрын
How u getting on?. Hope it calmed for u.
@BrianaBanosPreventable 7 ай бұрын
Just these past two days it's finally been calming.
@anmakagie 7 ай бұрын
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.
@BrianaBanosPreventable 7 ай бұрын
Thank you for sharing your lived experience with the newer drug. And for the love xx
@Paul-qq7mh 7 ай бұрын
While i was taking Dupixent my neck and face where so red raw that i had to stop taking it....
@BrianaBanosPreventable 7 ай бұрын
So crazy how it affects us all so differently
@N4MIEclipsePlays 7 ай бұрын
Had me in tears, going through tsw at the moment. About to start dupixent
@xyrocknirmou8699 7 ай бұрын
God bless you Briana one day you will be cured from this stay strong
@addiesears7407 7 ай бұрын
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🩵
@Rebecca236 8 ай бұрын
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 8 ай бұрын
This really does mean a lot. Thank you, dear 🫂
@mkjnbs4288 8 ай бұрын
briiii, i am so sorry. this broke my heart... sending lots of love and prayers. you are so strong. you give us hope. we love you.
@BrianaBanosPreventable 8 ай бұрын
And I feel the love
@sairamughal8336 8 ай бұрын
Sending love and hugs Bri. I'm 7 years and 8 months TSW and the sh*tshow never seems to end.
@BrianaBanosPreventable 8 ай бұрын
We are the strongest people I know
@Momina213 8 ай бұрын
I feel for you ❤ Did you consult Dr.Rapaport? I know he is very experienced and expensive as well but it’s totally worth it. My best wishes to you.
@BrianaBanosPreventable 8 ай бұрын
I am not a fan of his.
@Momina213 8 ай бұрын
@@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.
@kjgf1234 8 ай бұрын
Sending you so much Love Briana! This too shall pass. Stay strong.
@kjgf1234 8 ай бұрын
❤❤❤
@christinanatchov2088 8 ай бұрын
I’m so sorry it didn’t work out, everything will be ok Briana. Something will work, just keep trying different ways until your body heals. My son just got off dupixent as well, he had major facial flares and eye conjunctivitis with eye pain. I totally feel every emotion of yours in this video because my 18 year old is going through the same thing right now. Our life is constantly being turned upside down. He started using hydrocortisone again after the dupixent flares last week cause it was so bad. Especially after being off steroids for over 3.5 years. Tsw started for my boy when he was just 13 years old, you can imagine he is not your typical teenager, much more mature and just a different person completely now. He just told his derm today that he is done with biologics and immunos for now and wants to try to heal his way. Ice baths, cold showers, sauna for a few minutes, salt baths and intense exercise has helped a lot. I don’t know how he does it but there is a fire inside my kid I haven’t seen in anyone. But now we have to somehow get off these creams again. It’s exhausting… we just have to keep going and do whatever we can to get through this. It’s so interesting that low cortisol symptoms are similar to tsw symptoms, like, can’t these doctors fix at least that problem? How do we get our natural cortisol to go up as quick as possible without aggressive drugs? I would think if we had that solution then we don’t need creams. Hang in there…you will get better…
@BrianaBanosPreventable 8 ай бұрын
Wow. What a resilient boy you have. You should be so proud. Thank you for the lovely and kind words. I hope that one day, it may be possible to create a group for kids and teens to be able to cha online with one another so they don't feel so alone.
@christinanatchov2088 8 ай бұрын
It’s a great idea to have a chat group for kids/teens. I am so proud of him, he literally told me when he was 15 years old that he is so glad he is going through this because he is a much better person now. I was holding back tears because as a mother I just wanted to rip my heart out and give it to him if that healed him. He still claims he was not as nice of a person and lacked empathy and compassion. It’s so profound how we reflect in times of pain and suffering, even at such a young age. The things you’ve learned through this experience have only made you stronger but I know that enough is enough now. We need healing, where there is a will there’s a way. Right now all we can do is just throw everything at this thing that we know helps us, and most importantly do whatever you feel is best for you. As for the financial cost this can have on people, it’s just insane. Every penny we saved to expand our home for the last decade is gone to doctors and treatments and me taking time off work to be with my son. But that’s ok, I would do it all again, money can be made, the most important thing is health and the knowledge we’ve all gained is priceless. Hang in there, you will figure something out and I will wait for your next few videos where you will be better again.
@BrianaBanosPreventable 8 ай бұрын
@@christinanatchov2088 he's extremely lucky to have you as a parent. What a gift to him. Thank you for pouring love into him during all of this.
@rosarylover 8 ай бұрын
I’m praying for you my friend. TSW is an absolute nightmare. Sending love ❤️
@tpb1006 8 ай бұрын
My Heart breaks. I am 5 years in TSW and never had a break. My facial hair loss in patches is the most awful experience ever. I dont even know anything about life now and why I am living.
@BrianaBanosPreventable 8 ай бұрын
Awe love. Sending a gentle hug. Remember, if you're ever feeling too far down in the darkness, don't do it alone Therapy or medications that can help give you that break. Don't bet yourself up if you NEED the help
@tpb1006 4 ай бұрын
@@BrianaBanosPreventable Hi Briana, Do you have any updates on the condition now.
@BrianaBanosPreventable 4 ай бұрын
@tpb1006 at the moment, all updates are on my instagram. I endeavor to make a video at some point in May x
@HealYourSoulForever 8 ай бұрын
I hope you feel better soon. You have got this! How are you able to afford rent without job?
@BrianaBanosPreventable 8 ай бұрын
Bleeding money atm.
@tonaruch8623 8 ай бұрын
I wish u strength