My PANDAS Journey - Seizures, Delusions, Paranoia, Paralysis, Losing Myself….

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  • Опубликовано: 8 ноя 2024

Комментарии • 1,1 тыс.

  • @kaylakoonz6838
    @kaylakoonz6838 2 года назад +198

    I am a nurse. Seeing your struggles of simply not being "taken seriously," has been a constant reminder to me with my patients. I appreciate your vulnerability and admire your strength. Wishing you all the best

  • @leahbaer11
    @leahbaer11 2 года назад +543

    WOW. Evie i’ve been following you since 2020 but seeing your story laid all out like that… you have been through so so much. It gives me even greater respect and admiration for the incredible STRENGTH you have. Not to mention positivity that never fails. You inspire me and so many others on the daily. Please never stop your fight and please keep sharing with the world; you are helping so many beyond just yourself (and thank GOD they’ve finally figured out what it is). I learned long ago hope is one of the most powerful forces there is. Never lose that.

  • @isabellegrady4324
    @isabellegrady4324 2 года назад +1432

    It just goes to show how important it is to just be listened to. Doctors know a lot but they don't know everything, and sometimes I think they get scared of not knowing how to help and brush off things they shouldn't. I'm so happy for you, Evie, and I hope the next steps in your treatment are positive ❤️

    • @cheetahtfk7274
      @cheetahtfk7274 2 года назад +56

      The best thing a doctor has ever told me was "I don't know what's wrong with you, but I'll do everything I can to help you". I've seen dozens of doctors and had some promise they can help or "cure" me. Giving me false hope and sending me into depressive states when it turns out they are wrong. I've learned to not get my hopes up for anything because of them. But hearing this one doctor bluntly tell me that he didn't know what was wrong, but that he wouldn't stop trying, was the most amazing thing. He didn't pass me off to someone else, he didn't lie to me, he was just honest and caring. I've moved on from that doctor because he did exhaust all options he could think of, but I will always be grateful for him. Even though I still struggle with this medical condition and I've got no answers, he did everything he could.

    • @mary-janereallynotsarah684
      @mary-janereallynotsarah684 2 года назад +2

      I hope they find a cure for this. Stay strong! 💕

    • @ayshafareed4935
      @ayshafareed4935 2 года назад +9

      @@cheetahtfk7274 I believe to have someone's genuine support is one of the most healing things in this world.

    • @ayshafareed4935
      @ayshafareed4935 2 года назад +4

      More like scared of their loss of "face", because they don't know. I.e. pride !!

    • @73cidalia
      @73cidalia 2 года назад

      @@cheetahtfk7274 Have you not even gotten a diagnosis? Was genetic testing done?

  • @irishdancr8
    @irishdancr8 2 года назад +185

    Fighting for the right diagnosis and treatment can be so hard. You can feel like you are rolling a boulder up a hill that noone even believes exists. I'm so happy you got a diagnosis! 💜

  • @shansully4609
    @shansully4609 2 года назад +686

    This made me cry. I appreciate you sharing this. You were to brave, strong, and vulnerable to make this. You’re changing the world Evie.

  • @melissalevine7906
    @melissalevine7906 2 года назад +214

    Thank you Evie. My daughter has the same symptoms you have which started 3 months after a severe strep infection. Whenever I brought the fact that I thought the seizures were related to the strep infection they brushed it off as anxiety due to my recent divorce with her father. She was eventually diagnosed with conversion disorder, Tourette’s, severe anxiety/ depression, schizophrenia , body dysmorphia leading to countless hospitalizations. Because of you I realize I was probably right all along and will continue to fight for answers for my daughter. Thank you Evie for sharing your journey. You give me hope from this nightmare.

    • @IRLClemont
      @IRLClemont 2 года назад +24

      im so sorry; i hope your daughter is able to get the proper treatments and answers she deserves. I'd continue bringing up pandas if you have already / bringing it up if you haven't

    • @peenyweeny3834
      @peenyweeny3834 2 года назад +15

      its insane how so many doctors will come up with the stupidest reasons to invalidate a womans concerns. im sorry its this difficult to get proper care for ur daughter, please dont give up

    • @phoebesmith8154
      @phoebesmith8154 2 года назад +1

      @@peenyweeny3834 look up medical gaslighting. It’s sadly far too common for women 😭

    • @peenyweeny3834
      @peenyweeny3834 2 года назад

      @@phoebesmith8154 yeah, its way too common for any marginalized group especially in countries with more exploitative healthcare like america. genuinely i think doctors who treat their patients this way need to have their license revoked

    • @phoebesmith8154
      @phoebesmith8154 2 года назад +5

      @@peenyweeny3834 It happens in the UK too.
      I just found out I have a tethered spine. My dr knew nothing about it (as it’s soooo rarely found in adults, but it can lead to dementia etc and is degenerative). They thought that cause I’ve had it my whole life, I should just ignore it and accept that my back pain is ‘chronic pain’ despite it appearing out of nowhere just under a year ago. That it’s not linked to the tethered spine….
      I sought out a second opinion from a neurosurgeon and they said that I was right not to ignore it and have now been referred into neurosurgery.
      My dr made me feel like I was exaggerating ‘chronic pain’ despite the facts and my mri results telling me otherwise. It’s sadly far too common for women to be treated as though their problems are mental health issues even when it’s actually something physical. (this is a whole other story, but tdlr: I was prescribed antidepressants for fatigue - with no mood symptoms. Now I find it could be linked to my tethered spine…)

  • @simply_pet
    @simply_pet 2 года назад +253

    I really hope you can find some relief from all of this, this all looks so terrifying to go through

  • @hazelnut5084
    @hazelnut5084 2 года назад +15

    I've had PANDAS for almost 10 years now and the lack of awareness is prevalent in my life. It's so hard to explain to people what is going on with when I find it hard to say anything at all. My mother has seen me through it all and she's the only one who knows even a fracture of the true extent of what I've been through. I can't explain how comforting and incredible it is for someone with the same terrifying and reality altering disease tell their story to thousands of people. It gives me hope for being understood and completely healing. I experienced so much of the same horror that you did and felt exactly the same when I found a doctor that understood my case. He actually LISTENED. I have come a far way from causing my own bruises and isolating completely. PANDAS patients can get better, we just need so much support and love. You are incredible. Thank You so much, Evie. I hope you are given every opportunity to feel fully like the beautiful person you are

  • @julkathedeadflower_
    @julkathedeadflower_ 2 года назад +188

    evie, you can't imagine how much im proud of you. you been trough lots lots of shit that u don't deserve! please never give up on yourself, hugs and tons of kisses from me! 💗

  • @Ellie-jr5re
    @Ellie-jr5re 2 года назад +104

    it is horrible that you have been through so much, hell and back, just to be here. you are a real force to be reckoned with, evie. you're incredible.

  • @im.emilyyy
    @im.emilyyy 2 года назад +154

    Seeing more and more people bringing awareness to PANDAS makes me so happy. I have a friend who has the condition and she too shares her story. Her channel is PANDAS my dog and me. I had never heard of it until she was diagnosed but now i know what it is, i also try to make people become more aware of it and its side affects. Stay strong ❤❤

  • @sophiaortiz6012
    @sophiaortiz6012 2 года назад +15

    Wow. I am so happy that I found a video about PANDAS. I was diagnosed with PANDAS when I was 7, and while my whole journey was quite different from yours, it’s still so similar. This video almost made me cry because it brought me back to those early days of complete confusion, struggle, and hopelessness. I still have OCD and Tourette’s, but after treatment, my life was changed completely (for the better)!! I am so glad that you have been diagnosed and are finding treatments!! You are not alone!!

  • @jackcoleman1784
    @jackcoleman1784 2 года назад +160

    I've watched you at least since you were diagnosed with Tourettes and just wanted to say please keep fighting kid. You make it easier for some of us with our own personal battles and misdiagnosis to keep going. I know that's not something you ever asked for but you mean so much to some of us. Every day is a battle won. I'm happy you got your diagnosis and I hope it's only good things for you from here on out.

  • @breezefire
    @breezefire 2 года назад +6

    My younger brother was diagnosed with PANDAS several years back after struggling with mess of behavioral problems and mental health issues. Luckily, his was caught not long after and they were able to treat it. It's honestly kind of wild to see just how much it could have possibly progressed in him...
    I genuinely hope you are able to get the treatment you need to regain your body and mind.

  • @erinthomas3117
    @erinthomas3117 2 года назад +74

    You have no idea how comforting this is for me, I'm in a bit of a rough spot with my anxiety/emetophobia (fear of vomit) so seeing someone who's been through the ringer still be able to thrive is really comforting because it cuts through the anxiety a bit and gives me some hope that what I'm going through isn' the end all be all :) Thanks Evie

    • @jingpan3674
      @jingpan3674 2 года назад +5

      I hear you, I had really bad panic attacks 3 years ago, I got sent to hospital many times in one months, but I got better and better after reading books about it, I learnt anxiety attacks and panic attacks are terrible, but they can go away with your own attitude, I tell myself no body died from it, calm down, I will be fine.
      three years ago, I had to take care of my three little boys still even though panic attacks hits me, I tell myself I will be helped by someone on the street if I start my episode outside pushing stroller with my baby in it , panic attacks stopped for 3 years since I think about it this way, I accept it and not scare of it anymore, it doesn't come to see me anymore. I found people with anxiety are actually the real brave people cause we need to do what we need to in daily life also be friends with anxiety, that's not easy, not everyone can do it.
      You are not alone, you are your own saver, love from a Chinese mom in Canada!

    • @sarahmurphy2915
      @sarahmurphy2915 2 года назад +5

      I get you It's amazing to find someone just like me, at one point I couldn't bring myself to eat food, go out with friends, eat inside a restaurant, be in public, go to school. It took so much time that I could have been happy away. It was so frustrating going through so much to make progress and one thing goes wrong in your life and your straight back where you started it's depressing, I know we don't know each other but it was nice being able to relate to someone on such a personal level so thanks 😊

    • @atticraft08
      @atticraft08 2 года назад +4

      I have had emetophobia for as long as I can remember, and it started to get really bad last year. It has got better since then but it has still caused me lots of other problems. It is so nice seeing other people who understand what it is like. You are never alone ❤💜

  • @cassiesingleton5903
    @cassiesingleton5903 2 года назад +23

    Thank you for making me feel like I'm not alone. I'm tearing up here. Seizures changed my life. School wasn't possible. Everything felt pointless. Why go out, why try... I'm a burden to my loved ones, and I scare strangers. I'm not alone though, and that's comforting. I wish you nothing but the best for you Evie

    • @miriamparker696
      @miriamparker696 Год назад

      Good luck with everything you’re going through. Though I can’t understand how hard it is, I will tell you there’s more people like that in the world than you and Evie

  • @sarahwalton-schmidt8385
    @sarahwalton-schmidt8385 2 года назад +4

    I had PANDAS caused by Lyme Disease. It’s so horrible. So glad you’re getting treatment now.

    • @trud6346
      @trud6346 Месяц назад +1

      Oh no im so sorry . I hipe igs gets better for you

  • @daniellemcmillan982
    @daniellemcmillan982 2 года назад +86

    This is so powerful, and really got me emotional because I’ve struggled with mental illness for ten years now, and I can’t imagine what it would be like to struggle with every physical thing you went through as well. You are so incredibly strong Evie and you inspire me to keep fighting 💜💜💜

  • @loooouu
    @loooouu 2 года назад +53

    I have a deep respect and admiration for you, and I'm sure thousands of people too, keep being the way you are, you will win many fights and win the hearts of thousands more.

  • @millybennett8351
    @millybennett8351 2 года назад +28

    I really look up to you Evie. So much admiration for you and your mom. Through all of this you've managed to grow into such a lovely, wholesome person and remain a joy to watch. Much love ❤

  • @RLWillow
    @RLWillow 2 года назад +63

    Just wanted to tell you Evie that you and your mother is so amazing. I LOVE LOVE YOUR BOOK. Both audio and the hardcover. I have learned a lot from you and I always think abt you and your mom. I hope that you are having a lovely day and pls give Teddy and your bear popcorn a hug from me pls.

  • @Thornza
    @Thornza Год назад +1

    One of my best friends has PANDS/PANS and i lost him as my friend because of it (he’s alive and well). 2 years ago a doctor was/is sure i have it and for unknown reasons every time she mentioned it i’d have flashbacks to losing my best friend… I’m still struggling and have no answers still, so i’m trying my best to get over the trauma of my past experiences with PANS/PANDS as it might be a diagnosis that’ll return to me in the future. I’ve only ever met/seen one other person with PANS/PANDAS and just hearing your story and your journey is helping work through my personal struggles and seeing i’m not alone in this. I will always be so thankful for having you as one of my favourite content creators and for how much awareness you bring, negative and positive, i’m so so grateful for you

  • @ArtofLaurenGlenn
    @ArtofLaurenGlenn 2 года назад +34

    I’m so happy you finally got a diagnosis. You are so strong and beautiful! We love you, Evie 💜

  • @KatieKillsjoy
    @KatieKillsjoy 2 года назад +1

    I feel so weak watching this. The things I crumble at, while there are people overcoming things like this. I hope you find all the happiness, you deserve it ♥️

  • @avam3695
    @avam3695 2 года назад +30

    Omg evie. I cannot say this enough, you are a WARRIOR. To go thru so much like you have and the fact that you are still here fighting for your life and sharing your story is unbelievably inspirational. Thankyou for being on this earth. I love you evie, keep staying strong! 💕💕💕

  • @prettypriviledger
    @prettypriviledger 2 года назад +1

    you're a SO DAMN GREAT FIGHTER. i'm sorry we're not there for you physically, but mentally we're always here. i love you so much! just know that you're helping more people than you just can imagine.. i hope the PANDAs will be treated right!! and you will feel MUCH better. sending lots of love and support

  • @juliettequinot8903
    @juliettequinot8903 2 года назад +13

    I'm genuinely so happy you finally got a diagnosis! I've been following you for a few years now and have seen your health degrading slowly... My mom regularly asks me about you and how you're doing. We're cheering for you here in France! So glad you now know which way to take to find a treatment that will make your life easier! Lots of love Evie. You're a ray of sunshine

  • @sharonjacobs5351
    @sharonjacobs5351 2 года назад +8

    What a sweet and talented young lady . I too have an illness thats autoimmune and untreatable . I'v had so many Drs so many tests I can't count . But , I think people's unbelief , especially the Drs that I was sick , was harder to deal with than the illness it's self . Your amazingly brave ! Your an inspiration to every one who suffers . Your here for a reason ! Try to be brave still in the midst of the hell your going through ! Indeed my friend your story is not finished ! . . 💖 .🌹

  • @sabrinaashlynn3831
    @sabrinaashlynn3831 2 года назад +1

    All those severe, life threatening symptoms and they still brushed you off and didn't run every test they could. That is so TRAUMATIZING, on top of everything else you already had to go through in your own body daily. I'm so sorry. And very happy you got to find a doctor that will listen, take you seriously, and put you on a treatment plan

  • @lanna8365
    @lanna8365 2 года назад +24

    As soon as one challenge was overcome, something else flared up and tried to take you down. I'm so sorry that life has put you through all of this strife, but I'm so glad that you are still here. Continue to stay strong and continue. You have inspired many, myself included, and showed so many that they weren't alone, in the same way that you are not alone. Thank you for so bravely sharing your story, so many people appreciate it. I would be a completely different person if I hadn't discovered your channel, I learned about myself and the world around me. I learned that it's okay to be different, and no one is ever truly alone. I learned to just keep going, no matter what. You have changed and inspired so many lives through social media, I'm sure. Your bright and cheery personality puts a smile on my face through a screen, I can't imagine how happy it makes the people around you. Im glad you were finally diagnosed so that you can have a name for all of this that has happened to you and you are able to find better treatment. You deserve everything good in your life, and i can tell you give so much good to others. Keep being you Evie, we love you ❤️

  • @endersmith162
    @endersmith162 2 года назад +4

    It's so hard to get people to listen when they can't physically see the cause, but doctors NEED to be the ones who ALWAYS LISTEN to their patients, and never give up on them. You rock, Evie. Better days are ahead.

  • @teresashelton8819
    @teresashelton8819 2 года назад +1

    I knew the first time I saw one of your videos that you have a beautiful special spirit! Your strength to keep going is amazing! I am soooo happy you have found a doctor that is giving you the care you need! My prayers and love are with you and your family as you get better! 🙏🏼❤️

  • @seatherny_y
    @seatherny_y Год назад +3

    Yay someone actually taking into consideration PANDAS exists. My girlfriend has this condition and it’s awful to see her struggle, she started to get treatment and it’s so great seeing her improve.
    I myself have severe epilepsy which has caused me minor brain damage over the years it’s just escalated and right now I’m in a really bad place with it. This video is giving my strength thank you!

    • @miriamparker696
      @miriamparker696 Год назад

      Good luck!!! Just remember, you are loved. REALLY. Sounds cheesy but you are never a burden

  • @MrDasty3671
    @MrDasty3671 2 года назад +1

    You are a great fighter. A great hero. I am sending greetings from the Czech Republic in Europe. You probably don't know, hold on and be brave!

  • @pickle_38
    @pickle_38 2 года назад +15

    I’ve read your book and watched your videos so I felt like I had a slight understanding of your story, but this really feels like it puts all the puzzle pieces together. I’m getting such an indescribably deep feeling of secondhand hope and joy just hearing about you finally getting what you need, and I’m so grateful that you persevered through the worst to come to where you are. It’s truly amazing that you have so many people and animals who love you, hugs 💜

    • @auchterawer1150
      @auchterawer1150 2 года назад

      I agree: I've been following her here, and on TikTok, for a couple years, have read her book, know her story, but this video did help make some of the puzzle pieces fit together better. Very well put together Evie!

  • @lifeaccordingtosian
    @lifeaccordingtosian 2 года назад +18

    Love this, Evie - not your battles, but how you’ve created this insight. I really hope that all medical professionals, especially those who’ve spoken with you before, watch this and tap into their humility more x

  • @ireneyoung85
    @ireneyoung85 2 года назад +1

    My name is David Young, I'm 64 and been watching your video off and on for about a year now, I wept while watching this because of your painful journey but am heartened to hear of your possible improvement and hope for a continuation in this, you are beautiful in looks and spirit and I wish you well in your future and continuing progress ❤

  • @cheetahtfk7274
    @cheetahtfk7274 2 года назад +7

    You inspire me so much! I can relate to a lot of what you've gone through. I've got an undiagnosed, chronic medical condition that effects me every second of every day since I was 10 years old (I'm 30 now). I have been to dozens of doctors and had hundreds of tests and treatments done and no one has been able to find anything physically wrong with me. I've had doctors tell me my condition is in my head and I deserve to feel this way. That it's my fault. Or even that I'm faking. Let me tell you, 20 years of hearing that from "professionals" really takes it's toll. I've started to believe them.
    I had to drop out of college because of my worsening condition, can't have a job or drive, I've basically become a shut in that only leaves the house for doctors appointments. I want to live, not just exist. Your videos really help me see that I can do so much more than I think I can. So thank you 💛

  • @nataliescanlan1957
    @nataliescanlan1957 2 года назад +2

    You are such a strong and beautiful young lady. Despite all these problems (which I’m sure are terrible and frightening to live with) you shine through and your family support is wonderful to see.

  • @tjwilliamson8484
    @tjwilliamson8484 2 года назад +4

    I am so proud that you never gave up looking for answers and never once stopped advocating for yourself! You are truly 1 in a million

  • @im19ice3
    @im19ice3 2 года назад +1

    thank you for holding on despite how many times it felt impossible to, sharing your story can be a gift to many people who felt just as desperate for some relief

  • @miguelangeltlapalcoyoamend4102
    @miguelangeltlapalcoyoamend4102 2 года назад +3

    hello Evie my name is Miguel Ángel I am from Mexico, and I also have Tourette Syndrome and post-traumatic stress and obsessive compulsive disorder (OCD) and all of us in the world understand what it feels like to suffer from this condition in our own flesh, but we must never give up and it is time not to remain silent and raise awareness about all these disorders, and tell our experiences we admire you Evie we are not alone and please never stop dreaming. 💞👏

  • @reddblueblur
    @reddblueblur 2 года назад +1

    and I thought I had it bad with seeing blood equaling a faint. but you've had it so bad over the years.. I'm really sorry for you, and I'm glad you've found someone who is the light up for your future, who Can attempt at changing things. you've done all your journey, you've done your part, now it's time for people to do their part with you. Best of Luck with the medications and things going forward, I'm glad you're able to be atleast a bit more happier.. it's nice to publish something like this, for awareness and then also if someone is going through the same or similar, it's just very loving.
    more love than you'll ever know back and forth from the moon and back for you. Stay and Stand strong, it's not the end nor is it over. YOU can do this.

  • @spacecaps2875
    @spacecaps2875 2 года назад +8

    I’m so sorry you have gone through all of those awful things. Your positivity through all of that amazes me and I’m so glad you have started to find some relief. I’ll be praying for you and I hope this treatment will really work. ❤️

  • @dalemartinez3382
    @dalemartinez3382 Год назад

    this girl fighting for herself is amazing. her family support is equally amazing. fight on girl, you are awesome !

  • @editsall3902
    @editsall3902 2 года назад +9

    I know people have probably been telling you! But you are the strongest human being I have ever seen. You are consistently posting videos and making content for others, even though you are so hurt and you were going through so much pain and so much struggling! This is something I could never take on, and you taking on this IS AMAZING AND IS MAKING YOU SO FREAKING STRONG! and I know that it probably doesn’t help that it is so hard on you but just know that whenever things do get bad or things start to hurt, you are an amazing, strong, and wonderful person, no matter what your brain tries to tell you you are amazing! You are a fighter and you are strong! I am so happy you final get a diagnosis for thing! I am always here even if you have no idea who I am, it doesn’t matter because I feel that in my heart you need someone to tell you have amazing and strong you are. Never give up, no matter how hard things get because you are loved by so many and I love you!,
    -Amy Z.
    I love you Evie, and don’t let anyone not even yourself, convince you that you are not strong enough or brave enough to take on the challenges your facing in life

  • @sharkysharkerson
    @sharkysharkerson 2 года назад +1

    Sorry about what you're going through. I'm glad the current treatment is helping. Not many people know about PANDAS.

  • @kittygamer212hewo9
    @kittygamer212hewo9 2 года назад +6

    I am so glad you finally got a diagnosis. My sister has pandas and has been diagnosed for six (maybe? Idk it's been too long) years and it took forever to get that diagnosis. There still are very few doctors who even know about it. Hopefully it all goes better for you. There are good days and bad days. The only thing you can do is power through. I wish you the best of luck!

  • @add_xtine775
    @add_xtine775 2 года назад +1

    O this is wonderful news sweet girl! I really pray this is the answer you've been needing for far too long. If a doctor isn't addressing all issues, it never hurts to advocate for yourself to get answers. Sending you all the love, light and positivity in the world

  • @oogravyoo
    @oogravyoo 2 года назад +9

    ❤️ I'm glad I found you during the pandemic. You're truly an inspiration.

  • @ellaschnare2878
    @ellaschnare2878 Год назад +1

    this is a summary of your book, and I got it for Christmas. I love the book. Evie, you ar eso brave to out all of this out and to educate us!! Thank you fro everything you do. This made me cry. I was stuck in a state of awful depression last year, and I am slowly but surely climbing out and recovering. You have really helped me, more than you know, and more than I think you can imagine. Stay strong. I am praying for your treatments to go well.
    Also,
    Your family is so great! Your mom, dad, and brothers. They are so supportive and kind and loving.
    Anyway, I am wishing you the best, and I truely believe everyone need to earn more about this. (And read your book)

  • @George1789
    @George1789 2 года назад +10

    You’ve been through so so so much lovely and yet you still always have a smile on your face , there’s often a fine line between being inspiring and someone just living their life but personally you inspire me to try and smile every day even if It feels so wrong for a smile to be on the outside of my inside especially on my bad days. I really hope the rest of 2022 and beyond is your year and your time to be Evie because you really do deserve it after what life has thrown at you. Keep fighting sweetheart 🐼

  • @DelightedStudios
    @DelightedStudios 5 месяцев назад

    The first time I saw stories of people like you Evie, it scared the s***out of me and broke my heart. But now I'm thankful that you share it because just seeing you keeping fighting gives strength to so many people. It inspires not to give in on my (incomparably smaller) struggles. So thanks :)

  • @e.ballerina954
    @e.ballerina954 2 года назад +7

    I have always been afraid of showing my "flaws" and asking for help, cause I was always brushed off. Which made me hide my symptoms even more.
    I finally got my diagsosises over the past two years but I'm finding it hard to stay positive and keep up the hope of having a "normal life", I don't want to be a burden on my family. But you always give me hope that I will find a way to live a full life without having to underplay my fysical and mental difficulties. I am so thankful that you want to share your story and educate people. You make me feel like I'm not alone, even if our situation isn't the same you have helped me gain the strength to keep my head high.❤

  • @Ella-dx3io
    @Ella-dx3io Год назад +1

    You are so strong and youve been through so much but you havent let it stop you.
    You are an inspiration to me and many others.
    Keep fighting and being the amazing person that you are

  • @jamieramsay7030
    @jamieramsay7030 2 года назад +5

    Evie, I’m so incredibly proud of you. I know how hard it is to go through things like this, it really does strip you of your personality. You are such a warrior and you’re such an idol for a lot people going through some of those horrible conditions. Love you 🌸💕

  • @Lex_cl0ud9
    @Lex_cl0ud9 2 года назад +1

    I'm legit holding back tears rn it is so crazy to see all the stuff you went through I'm so glad you found out what was wrong with you, you are strong person and thank you for sharing your journey this is my first time hearing about PANDAS so it was very cool to see this. Anyways I hope your doing great and having a great week ❤

  • @chloechapman5172
    @chloechapman5172 2 года назад +4

    I’m so glad you have finally found answers after such a long hard battle Evie. You’re the true definition of a Warrior❤️

  • @DfR4n
    @DfR4n 2 года назад

    Not gonna lie, this video got me teary eye. I follow you since 2020, but never realized how much you have dealt with. Now I have tremendous respect for you and your family. I wish the best for you kiddo, you are such a joyful warrior and an inspiration of hope to many of us.

  • @emmab556
    @emmab556 2 года назад +4

    Thankyou for sharing your vulnerable side and your inspiring story u are incredible and should be so proud of yourself for everything u have over come ❤

  • @rubyyeates1618
    @rubyyeates1618 2 года назад +1

    I was crying but when the song changed and the happy news came up i smiled a massive smile

  • @alanokamura6250
    @alanokamura6250 2 года назад +5

    Thank you for sharing your story all this time. Can’t be easy i’m sure. This video brought tears to my eyes because I see our daughter in you. Pretty much the same timeline and conditions to you. She was diagnosed with PANDAS when she 13/14yrs. She now 23. She didn’t get the motor tics but at one point was diagnosed with Tourettes as well. OCD, self harm, eating disorders were all the American. I feel for you and your family. It is a looooooong road just to get the diagnosis and then a looooooong road to getting better. To the outside PANS/PANDAS sounds made up which is frustrating. PANDAS is more prevalent than people think. Over the past 10yrs more awareness has happened, no doubt you sharing your brave and powerful story will help others too! FYI, our daughter did IVIG and prednisone IV treatments, she has since outgrown those. FYI, she now lives on her own. Still has flares now and then but has the protocol to manage it.
    During this time of COVID and long haulers syndrome there are finding patients with brain inflammation as well, dealing with many of the same say symptoms at PANDAS patients. The silver lining to this is that more Dr’s are learning more about PANDAS treatments. The more Dr’s and researchers get on this the better!
    Stay Strong Evie!

  • @jadepetermann
    @jadepetermann 2 года назад

    I'm so happy you found someone to finally listen to put your needs first. I hope you can find the happiness you deserve.

  • @crayonzii
    @crayonzii 2 года назад +3

    That’s really brave of you to share your story. Sending love

  • @neurotoxin71
    @neurotoxin71 2 года назад

    You keep fighting Evie, this world needs your bright spark and bounding excitment and joy, you have over 600,000 people in your corner to back you up.

  • @Dingomush
    @Dingomush 2 года назад +3

    That is sooo freaking wonderful for you that you have a diagnosis And, a Dr. that listens to you. Awesome! Go fight it, Girl!…..

  • @ClaraJC99
    @ClaraJC99 2 года назад +1

    Glad you got a doctor to listen to you, it's so rare to find them these days

  • @myrillya
    @myrillya 2 года назад +4

    I'm so happy that you've finally found a doctor who's listening! Hopefully, you'll get the medication needed!
    I once heard of PANDAS because of one of these "I have a strange illness"-shows. I even heard of one IN these shows who was able to get a diagnosis because of them! So, I'm happy you've somehow heard of PANDAS and followed your intuition.

  • @porkio192
    @porkio192 2 года назад +1

    I can’t even comprehend the level of strength and beauty you hold. That’s right, you’ve got a lot of fight left in you. You have such a large community rooting for you

  • @astraldim
    @astraldim 2 года назад +4

    Doesn't know what world she is in, but somehow makes herself look absolutely perfect every single day.

    • @kayla33269
      @kayla33269 Год назад +2

      Idk about them but i personally find makeup and fashion very grounding when im dissociated! For me its a small form of taking back my body, even if it doesnt last all day

  • @trailsofsunshine4347
    @trailsofsunshine4347 2 года назад

    Watched the entire video with no skips. Your story deserves to be told and recognized. I am praying for your treatment, healing, and recovery. It is so beautiful that you continue to have hope and strength in this journey. Sending lots of love

  • @louisakaa
    @louisakaa 2 года назад +3

    Fake..

    • @louievbelt
      @louievbelt 2 года назад

      literally how.

    • @zanyisanalien
      @zanyisanalien 2 года назад +1

      you seriously think she faked this for 8 years-?

    • @louievbelt
      @louievbelt 2 года назад

      @@zanyisanalien exactly like ppl are so ignorant in comment sections..

    • @zanyisanalien
      @zanyisanalien 2 года назад

      @@louievbelt yup- ableist, ignorant, you name it TT

  • @cadavher
    @cadavher 2 года назад

    I'm so glad you AND your family have an answer. I watch the clips with your mom comforting you, and it breaks my heart. I have many health issues, but manageable. My 68yr old mother still takes care of me and I'm 33.
    I cant fathom your mother's frustrations, watching knowing there's nothing to do to stop it. You've got your mamas strength! And man is she one strong woman, just like you dear. Hugs to you both💛💛💛💛

  • @lilystarr226
    @lilystarr226 2 года назад

    I have been following you for a long time. I have Narcolepsy and severe C-PTSD. The Narcolepsy is a complication from chronic strep. I relate with you. Youbare a warrior! So glad to hear you got the answers you needed Evie 💜💜💜

  • @Kez_abi
    @Kez_abi 2 года назад +1

    I understand how much effort and time this must have taken to make!!!! Thankyou. I am so glad you are finally being listened to! Thankyou for all the education and awarness you have done!

  • @poet79eyes
    @poet79eyes 2 года назад

    I was in tears watching this video. Speechless. You are so so strong and brave. Never ever stop fighting.

  • @adaobieshi4297
    @adaobieshi4297 2 года назад

    You spent so long not knowing what was actually going on…I’m so happy you got answers and are getting meaningful treatment

  • @marljusweety
    @marljusweety 2 года назад

    I am so glad you finally got a proper diagnosis! This was so complex and so heartbreaking, it left me crying in the end. I wish you wouldnt have to deal with this anymore, but progress is being made, finally.

  • @misteral1083
    @misteral1083 2 года назад

    I'm somewhat at a loss for words.
    Because of who you are and how you present yourself on this channel, I think it's easy for people to feel a sense of connection to you. So this video carries so much extra weight because it's not just happening to someone we were only introduced to on this page, its someone we have come to know over a bit of time. It's pretty heartbreaking. Lord knows how it's been for you and your family.
    I send my sincerest wish that with a new diagnosis you are truly on your path to healing, freedom and the future that you and your family deserve.
    I'm holding back tears, and holding back from gushing about you all. Good luck Evie!!

  • @neenkuh
    @neenkuh 2 года назад

    Been following you for a few years now and hoped and prayed you would stay strong through all this. you are a WARRIOR. Just know that even though you dont know me, i'm incredibly proud of you and we will be standing right behind you when you fall.

  • @johnbillings5260
    @johnbillings5260 2 года назад +1

    So sorry for having your "normal life" taken from you. Thanks for having the courage to show what you are having to deal with and to show the reality of it all to the naive and ignorant. Chronic disease (especially undiagnosed or wrongly diagnosed) is a horrible thing to have to go through. I'm glad you seem to have a good support network.

  • @mku4963
    @mku4963 Год назад

    I’m so sorry you have to go through this. Remember we are all here to support you, and so are the people around you at home. You an amazing and beautiful person ❤

  • @moniquebrown18
    @moniquebrown18 Год назад

    Oh sweetheart….you are so incredibly strong. What you go through on a daily basis would bring most of the population to its knees. I’m a true believer that things happen for a reason. Stay beautiful Stay strong and never give up hope. All the love in the universe to u and your family!

  • @beccas7424
    @beccas7424 2 года назад

    Thank you so much for posting this, not enough people know what PANDAS is!

  • @AmyTucker87
    @AmyTucker87 2 года назад

    I’ve been following your story for a few years now and seeing this video made my heart break for you and your family.
    You are an incredibly strong woman Evie don’t forget that. ❤️
    I’m so happy that you are being listened to and are closer to finding out the cause to your health issues.

  • @xforeverknightx
    @xforeverknightx 2 года назад +1

    That actually brought a tear to my eye. It truly is amazing how strong you and your family are.

  • @xXTashaBabezZXx
    @xXTashaBabezZXx 2 года назад

    It is amazing that you are finally being treated by someone who is listening and it is working!

  • @nataliescanlan1957
    @nataliescanlan1957 2 года назад

    You are a testament to the power of human will and love. Your family but most especially your mum’s love that helped/s through the dark and hard times. You are a warrior Evie and I’m glad you have drs listening to you now, and have a diagnosis that makes sense of all you have gone through. We all take the good with the bad but you have really had to fight so hard. Be proud and stand strong knowing that you have weathered these storms and are an amazing, funny, special person. I watch something of yours every dad and you give me hope that my physical and mental health issues are going to get better not worse. Thank you for being so relatable and honest. Give mum a hug for me she is a rockstar. Bless you both.

  • @JMarta
    @JMarta 2 года назад +1

    Your story is not finished yet.

  • @WeRemainFaceless
    @WeRemainFaceless 2 года назад

    I don't know you and we've never met, just happened to stumble across this video in my recommended list. But you're an inspiration.
    Even though we've never met, I have an incredible amount of love for you. You've struggled and suffered, but you know what, you're going to be fine.
    You can take on anything life throws at you, you've got this.

  • @whitechair3846
    @whitechair3846 Год назад +1

    Evie I had no Idea it was this bad I'm breaking my heart watching this ur Mum and Dad are Legends for caring for you, thank you for showing us that this is a real thing and it gets noticed sooner..all my love to you and loved ones.

  • @a.m.s_vlogs
    @a.m.s_vlogs 2 года назад +1

    you do not know how proud i am of you for continuing to fight even through the toughest times. no one deserves this. you are a warrior evie. never give up!! xx

  • @alyssaaparicio2302
    @alyssaaparicio2302 2 года назад

    You are one of the strongest people I know , I admire your strength, you’ve been through so so so much, your still here fighting every single day and that is so inspirational, you are so loved and admired by many💖🌻

  • @LeizelAU
    @LeizelAU 2 года назад

    I'm so glad that you have a diagnosis. I hope this is the beginning of a much better life for you. You deserve the opportunity to be happy and healthy.

  • @cyrusphrogee
    @cyrusphrogee 2 года назад +1

    That is so much to go through. I am so happy that you are here and you have hope. You are amazing, thank you for sharing this. ❤️

  • @barbarawilliams5500
    @barbarawilliams5500 2 года назад

    Evie💜, I've watched your channel for years and watching this, I can't stop smiling. You deserve the world and more

  • @tamsinboldick7035
    @tamsinboldick7035 2 года назад

    Thanks for sharing. There are so many people going through misdiagnosed or undiagnosed, long-term illnesses & they're largely kept out of the public eye or even written off as 'it's all in your head/ attention seeking.'
    Thank you for bringing your personal journey into focus, to bring hope to others & hopefully open the eyes of some medical professionals - there is so, so much still to learn.
    I wish you all the best for your future. God bless.

  • @laia2086
    @laia2086 2 года назад

    I AM SO PROUD OF YOU, and omg thanks to that listening doctor (not often found...) you finally got diagnosed with the right thing!! so happy for u Evie

  • @jean-francoiskeighan826
    @jean-francoiskeighan826 2 года назад

    this made me cry, a lot. I felt your pain with this video but i gotta say that you impressed me for the person you are, a strong warrior of life, not giving up and finally being listen to. and working with crystals and energy will help you too like Reiki. you are a beautiful soul and I hope you find all the answers you need in all your sphere of life

  • @nataliapasternak9300
    @nataliapasternak9300 2 года назад

    You are an inspiration for people with disorders. You are a fighter ! A warrior ! Wish you a lot of support and a lot of love from Poland ! 😘