My PANDAS Journey - Seizures, Delusions, Paranoia, Paralysis, Losing Myself….
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- Опубліковано 29 лип 2022
- ❗️trigger warnings: hospitals, cannula’s, poor mental health, brief mention of self harm, seizure clips, upsetting footage, injuries etc…❗️
hey everyone, bit of a more serious video but i think it’s so so so important. PANDAS/PANS is such a silent and unknown disorder and can totally strip someone of who they were before.
so many children out there are undiagnosed & untreated because PANDAS mimicks just about every condition there is, OCD, anger management issues, anxiety, depression, tourettes, eating disorders and the list goes on and on…..
my aim for sharing this is to give PANDAS/PANS more of a voice. i didn’t even know what it was…and neither do most doctors.
if this disorder was caught much earlier on it would have prevented getting to the stages of catatonia & severe seizures.
but because i was brushed off for so long, my health slowly declined over the years until it got to where i am now💔
PANDAS/PANS: Paediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
following a strep infection, the body accidently attacks the brain, inflaming the basal ganglia.🧠🔥
the brain inflammation causes symptoms such as:
- food issues
- sensory difficulties
- OCD
- rage
- mutism
- separation anxiety
- tics
- personality changes
- nightmares/night sweats
- hallucinations
- paranoia
- delusions
- self injurious behaviour
- depression
- limb pain
- paralysis
- dystonia & muscle stiffening
- seizures
- cognitive decline
- difficulty in school
- dilated pupils
- hyper activity
- out of character behaviours
AND MUCH MORE….🧠🐼💚💪🏼
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 ❤️
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.
I hope they find a cure for this. Stay strong! 💕
@@cheetahtfk7274 I believe to have someone's genuine support is one of the most healing things in this world.
More like scared of their loss of "face", because they don't know. I.e. pride !!
@@cheetahtfk7274 Have you not even gotten a diagnosis? Was genetic testing done?
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
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.
couldn't have said it better
This might be an understatement
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! 💜
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.
I couldn’t have said it better myself 🖤
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.
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
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
@@peenyweeny3834 look up medical gaslighting. It’s sadly far too common for women 😭
@@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
@@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…)
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
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!!
I really hope you can find some relief from all of this, this all looks so terrifying to go through
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! 💗
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.
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
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
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 ❤❤
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 💜💜💜
I had PANDAS caused by Lyme Disease. It’s so horrible. So glad you’re getting treatment now.
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.
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
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!
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 😊
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 ❤💜
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.
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 ❤
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 ! . . 💖 .🌹
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.
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.
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
I also had PANDAS, and I had the same experience of being misdiagnosed and not taken seriously. I was having severe OCD, delusions, paranoia, and tics. It happened almost overnight and it was terrifying. I felt like I had lost control completely. When I finally got treated for PANDAS it was like a miracle, but ive honestly never been the same since. Its something I have to carry with me every day but its made me the person I am today. Thanks so much for sharing your story
I’m so happy you finally got a diagnosis. You are so strong and beautiful! We love you, Evie 💜
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! 💕💕💕
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.
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
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 💜
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!
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 ❤️
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!
Good luck!!! Just remember, you are loved. REALLY. Sounds cheesy but you are never a burden
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
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. ❤️
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 🐼
You are strong. So strong. I hope you will start to see results. Stay safe
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 ❤
been following you since mid 2019 and its amazing to me how far youve come, you are one of lifes genuinley lovely people and i am so happy youve finally got the right diagnosis x
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 🌸💕
This has just made me cry, I’m so so happy you’re finally getting the answers you deserve and are being listened to
This made me cry. I am genuinely so proud of you & so happy doctors are finally listening. You are such an inspiration to me & I admire your strength. Sending you so much love ❤️
I’m so glad you have finally found answers after such a long hard battle Evie. You’re the true definition of a Warrior❤️
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
That actually brought a tear to my eye. It truly is amazing how strong you and your family are.
im so happy you've came this far, im so glad that you have hope and a proper diagnosis. we love you! stay strong.
All of this just looks utterly exhausting to deal with on a daily basis. You're so strong Evie. Im so happy you're finally being listened to, I hope treatment goes well and you're able to get some relief 💖
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 💛
You are an absolute soldier Evie. And to have been making beautiful and educational content all throughout all of this. I'm so glad you're finally getting some relief, validation and the medical attention you've always deserved. You are a gift to this world and the world owes you a gift back.
You've got me crying out here like a little kid! I've been watching you for ages, and I am so so glad you're finally getting the long awaited and well deserved care that you need ❤
i’m so happy you finally have a doctor that listened to you and managed to give you the correct diagnosis after all these years!!! i’ve been following your story for about 5 years now and i’m so glad you’re finally at this point where you can get the help you need💗🥰
❤️ I'm glad I found you during the pandemic. You're truly an inspiration.
This video is so emotional. You are truly a warrior. Being so honest with the world and making the best out of your situation is awesome to see! I hope this journey gives you answers and relief. Praying for you!
I literally have no words. Thank you evie for being a light to me even tho you weren’t always to yourself. I’m glad things have started to look up more and more with the new diagnosis 💛
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 ❤
That’s really brave of you to share your story. Sending love
this made me cry! evie i am so unbelievably proud of you for sharing and getting through all of your lowest moments! you are the strongest person i know! i am so glad you are finally being listened too! ilysm ❤️❤️❤️💕💕💕🐼🐼🐼💜💜💜
I’m so proud of you and the journey you have come on!! I’m so happy to know that you are finally getting help and being listened to 💕
You and your family are some of the strongest humans I've come across!! 🙏🏻💜💜💜💜 I can not wait to see what the future holds for you Evie! You are a one of a kind beautiful soul 🦋🐼 sending all the hugs 🤗🙏🏻✨🌸
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
I'm so so proud of you Evie. I've been watching your journey for a few years now and it feels so relieving that your finally being taken care of correctly. I just want to give you a great big hug for making it this far. ❤️
This makes me so damn happy for you. I know the feeling of having to fight to get doctors to listen to you, and I know the feeling of just absolute joy and relief that comes with finally finding one that does. I had to fight for my own diagnoses for quite a long time, and I remember feeling weightless after I finally got them. All the weight of the unknown and the pain and the frustration lifted and I felt like I could fly. I am so happy that you’re headed in that direction, because that feeling? One of the best feelings in the whole world
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!
That is sooo freaking wonderful for you that you have a diagnosis And, a Dr. that listens to you. Awesome! Go fight it, Girl!…..
I'm gonna cry, this makes me so so so happy to see
This is incredible and amazing. I hope it starts to get easier now and you can enjoy being you x
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. 💞👏
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!
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. ❤️
You are such a strong human being… i could never imagine how hard and terrible going through all that was.. I’m glad you can see the positivity throughout it all. Sending love and support 🤍
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.❤
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.
Thank you for sharing. So glad you are getting the help and support you need. Thank you for taking us on your journey x
you are so incredibly strong thank you for sharing this and being so vulnerable...wishing you health and happiness!
Doesn't know what world she is in, but somehow makes herself look absolutely perfect every single day.
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
Fake..
literally how.
you seriously think she faked this for 8 years-?
@@zanyisanalien exactly like ppl are so ignorant in comment sections..
@@louievbelt yup- ableist, ignorant, you name it TT
You are honestly so strong and u went through sm. Were so proud of u, keep working girl! Ur doing amazing.
Thank you for this video Evie!! I can only imagine how hard it was to create, sharing all the tough times you've had to go thru! Am so glad u finally got the diagnosis and the doctors are listening/helping 😌🥰 Keep smiling and shining xx
I'm soo happy you found your answer 💗 I've been a subscriber for maybe 3 or 4 years and seeing your new diagnosis gave me chills
You’ve been through so much but it’s testament to your character that you still keep smiling and inspiring others. Also bless your mum - she seems like such a calming and loving person.
I watched this with tears in my eyes. You are so strong Evie! I am so happy for you that people finally listened to you and you know what is "wrong" and you get the help you need. You are so brave, strong and extremely vulnerable making and showing this video. You are an amazing human being ♡♡♡
Evie, watching you has helped me so much this last 8 months dealing with my own severe medical issues. Thank you. You got this, im pulling for you.
I feel so, unbelievably grateful that you’ve been open to sharing your story with all of us, and am so glad to have been recommended your channel. I cannot imagine the anguish you’ve experienced over all of these years, your perseverance to keep fighting is something you should be so proud of. I am so happy you have answers and are receiving the care you need, I hope the future is full of peace and joy for you, and am grateful to get to go on the journey with you 🖤
thanks for sharing, i hope you're very proud of how strong you are, can't imagine how rough it must have been to go through all that and come out smiling like you often are
Thank you so much for posting this. I have a lot of the same dxs as you and a few different. I’ve followed you for years and years now and the similarities in our stories is a lot! Thank you for spreading awareness for all of this, so many people are unaware of so much, you’re spreading good and spreading helpful knowledge and so so many people appreciate you for that
keep staying strong your story is inspiring , you have been through so much and yet you use that to advocate , keep fighting, we love you
I’m so proud of you, evie. For sharing your story and for never giving up and always fighting for yourself. And your mama, she is incredible.
Your story is incredible. The bravery you have to document and share your life is worth so much. Watching your mum rips my heart wide open and shows just how much love she has for you.
You are so incredibly strong, I wish you all the best and will continue to watch your journey
This video made me cry. I'm so amazed at how brave and strong you are, keep fighting!!
Ugh this just makes me cry all around. You are such a special human being Evie. Your will and spirit are just so beautiful and inspiring. It's so wonderful that you finally found a doctor that is willing to listen to you and really try to make you better. Your parents are angels on this Earth. I'm glad you have made such great progress even though this has been your hardest year yet. I'm praying for you in every single way!
this honestly made me cry, i’m so sorry you had to go through so much over the years but i’m so happy for you that you got diagnosed and that there is now more hope than ever. you truly are a warrior 💕
evie i am so proud of you for still being here. your story is heartbreaking yet full of hope now. thank you for sticking around and helping so many others. we love you so much 💓💓
you're an incredibly strong person for you to go through all of this and still be able to have your own personality and survive. In this video I saw just how much your family supports you, and I'm really happy that you have that. I hope that this diagnosis brings you peace and proper treatment. Keep being you
I love you so much, Evie. Your struggle is hard to watch - sooo emotional - but I'm incredibly thankful you've finally got some answers and your voice is being heard. Your courage is just so inspiring and you've already helped so many who needed a voice too. I pray for you daily and I know one day you will get proper long term treatment that will bring you much needed healing and peace of mind. Keep going, girl! You're doing great!
Thank you for sharing your story with us. I'm so proud of you! We are here with you at all times. You're so strong ! Evie, I hope that now everything will change and it will be just a brighter side than before
I LOVED your book and this video is made with so much effort. Please never stop writing! ❤️
You are truly an inspiration 💜 thank you for sharing your story! I always look forward to your videos! Thank you for all the knowledge of all the battles you face on a daily basis!
I’m so sorry Evie 🥺🤍 you are such an angel and we are all so proud of you and your determination each and everyday! Such an inspiration xx
I love how open you are about this. I’m on a different health journey, but I can relate to the misdiagnosis and doctors brushing you off. I just want you to know that your videos give me hope that maybe I can get some better answers and treatment someday. Sending you good vibes and love!! 🥰
Thank you for sharing your story. I'm so glad you finally found a doctor that knew what was going on.
You are such an inspiration Evie! You never give up and you have such a light that shines through it all. Sending much love your way! ❤