FND Awareness Day UK ♿️❤️

[@M00N_IVY]

I got diagnosed recently with FND due to my seizures and tics! I haven't thought of brain fog or fatigue being linked though. I really like your boots! Thanks for sharing!💕

[@goofychicken6961]

what do your tics feel like?

[@M00N_IVY]

@goofychicken6961 Good question...umm most of the time, it has a sorta burning feeling that runs down parts of my body that I feel before I tic. I don't always feel it though before I tic but generally that's how it feels.

[@waffleaffle231]

I'm glad you got the diagnosis you needed! I recently got an ADHD diagnosis (completely different I know). It's super helpful to have and be able to get the accomodations and support you need! I hope things get easier for you ❤

[@M00N_IVY]

@waffleaffle231 Awe congrats! It definitely can be helpful to get diagnosed. I sometimes wonder if it's even worth it to get diagnosed with Autism as well. I think the only reason I might is that I'd have to in order to get disabilities. Even then they may not approve me.😅 I appreciate it, thank you! 💕

[@Misszebyrobloxvideos756]

@@M00N_IVY I also have tics as well as autism and anxiety but i dont tic to much on most of the time my head goes to the side and i make random noises and i do blink a lot and sometimes i tell my mum and my parents keep saying they think its just tics or Tourretts

[@islaelizabeth05]

I did a presentation on FND at Oxford during a programme. It was amazing how little info there is. Thanks for spreading the word

[@Milarose0723]

Hey Zara, I was diagnosed with FND a few months ago after 3 years of symptoms and appointments, and your page was the reason I thought to ask about it. Thank you so much for being such an inspiration and all the education you provide :))

[@marthastout5340]

So glad that there's more info on FND now. I was diagnosed 20 years ago when it was known as psychosomatic conversion disorder and my doctors didn't really now what to do.

[@laser6170]

My doctors still dont know what to do 😔

[@annaclaireanderson4727]

Oh my gosh!!! I HAVE FND! I was in a wheelchair for months, and I have had tics for years. There IS HOPE!! I was able to find CBIT and neuro-physical therapy and I haven’t needed a wheelchair in a long time, and my tics have massively reduced (but not gone away completely). I am so glad there is a platform out here that explains how it works and doesn’t work.

[@rooie20149]

As a fellow wheelchair user at times I just realised that my shoes will last so much longer lol I got to always find the positives

[@justgivemeabingusburger]

I am crying I have never been so seen. People never know if my condition- PNES & FND. I am a wheelchair user with tics, seizures, and dystonia. Even doctors get confused by my diagnoses. People regularly think I’m mentally incapacitated or just faking it. More people need to know about this, and understand our lives.

[@phalanges3647]

I have the same diagnoses...I see you, you're not faking anything and you deserve all the compassion and support you need. I hope you find doctors that are better to you ❤

[@piney496]

Oh wow, I think I just discovered something important about myself by learning about FND. Thank you! I didn't have words or an explanation about why i struggle with seizures, brain fog, memory loss, mobility issues, chronic fatigue... now maybe i do. Also, i love your aesthetic and queer and ND pride. Im also queer and AuDHD and disabled. I often feel alone about it. Thank you for sharing yourself so ppl like me can feel less isolated ❤

[@tx2obsessed23]

you’re so beautiful!! 💙💙

[@Skywreckdemon]

I have FND (from trauma). Your channel makes me feel a little less alone. I'm tired of people thinking that I can get better just by working on my mental health, or that it's not physical because it's from trauma.

[@nl8989]

❤❤❤❤❤❤❤

[@creative_carrie]

I have the same issue with my fibromyalgia. The pain clinic tells you that it's all in your head and to work on mental health. Luckily my GP knows that's not true. Fibro has recently been found to be an autoimmune condition. I wonder if FND might have the same in its future

[@InsertName-uq5jn]

I recently got a diagnosis of FND and this video brings me so much comfort.❤

[@mariaandresfernandez5456]

Omg I find it impressive when I see someone using a wheelchair well (I would probably bump into things all the time or be bad at it lol). I really admire you Zara for your strength and your willingness to show the world what it's like to live with various illnesses that affect you on a daily basis. I always wonder how you do it! I appreciate you so much! 💗

[@jazzamarazz]

Holy shit I have FND too! I was diagnosed two/three years ago after something traumatic happened and have had a hard time feeling understood because not many people know of it and when I have seizures, people assume it’s epilepsy instead of FND and panic which makes me panic. Your content really makes me feel happy because I get to see that I’m not alone in what I’m experiencing and that others are spreading awareness of this disability. Thank you for all that you’re doing and I’m proud of you!

[@Ser10199]

You are my inspiration Zara I lv you and your channel It’s like you guide me through life

[@kazuha.kishigira]

i LOVE that rainbow shirt! i think that non visible disabilities need more recognition as ppl will straight up say "oh ur not disabled" bc they can't see ur disability which pisses me off.

[@tree1568]

It has completely totalled my life. Being unable to get treatment because “you’re out of area” is so frustrating. Just want to get on with my life ❤

[@minkiluv_1024]

My girlfriend got diagnosed with FND in December, shortly before Christmas. She's been doing pretty good since then, but there have been some seizures here and there, and luckily I've been there for every one of them; as I have epilepsy I have a history with seizures, so I know the minimum of what to do until our school nurse gets to wherever her and I are. Her and I always stay together at all times, we're practically inseparable at this point.

[@unofficially-ace]

I had no idea today was FND awareness day! I think I might have it but neurology is taking forever to get me an appointment :/ but your channel has helped a lot with identifying what symptoms to look out for!

[@MIA80073]

Your pfp is amazing and I feel you with the neurology, I think I waited almost a year for mine

[@il0v3kn1v3s]

Thank you so much for this video. Two years ago, my mum started having symptoms of a cerebral infarction (ischemic stroke in the brain.) Sometimes her arm or leg would be paralysed, her vision would go blurry, and she'd have trouble speaking. The doctors however, thought she was faking it, and didn't take her seriously, because they saw in her file she had a history of mental illness. So they told her she was 'too young to be having a stroke'. then they just shoved it off as FND with mental illness as a 'cause' , sent her home without any medication, and just told her to stop making herself upset over nothing. The symptoms of course worsened a lot, and a few months ago she had a terrible stroke which resulted in her having to call 911 (thank god she still could) and almost dying. they took an mri and turned out all those previous times were strokes too and a significant part of her brain had died off. What i'm saying is, you are an angel from heaven doing god's work. thank you so much for educating people. you are not only helping people with FND, but also helping people who have been wrongly diagnosed with it. I wish I saw your content earlier and had realised what those doctors said was bullshit, and maybe I could have helped her more. For now I will just leave this comment in hopes that someone with a similar situation will see this. It could save lives. you could save lives. Lots of love

[@Jake-xs4et]

As a person with FND I understand what it's like and your videos are really helpful. Thank you so much ❤

[@NinaWei-Griffe]

It's crazy she reminds me a bit of rapunzel always being able to smile even in the worst days remember you have all our support 💖💖

[@LeanneRathbone-m5i]

I don’t have FND but someone I know does and I love watching your videos to help understand them ❤

[@stevenford4719]

Being told that I have FND only 6 months ago. I have been through a lot I am still learning & adjusting to having it. Your videos have helped me so very much. I truly thank you from the bottom of heart. Your videos have been a blessing to me in such a difficult time. ❤❤❤

[@notgettinganysleep]

I get having a disability not a lot of people know of, Happy FND day!!

[@ice_cream_happiness]

I love your outfit and thanks for spreading awareness! 💗

[@geenalizzi]

I don’t have fnd but I do have fibromyalgia and I get so fed up of people asking me “what I’ve done to my leg” whenever I use my crutches, when I say “nothing, I have fibromyalgia” they look at me and ask what it is. I don’t have the time in my day to even attempt to explain it to them! Invisible illnesses are the worst

[@loumona76]

Could you explain a bit what kind of crutches helped you ? My partner tried normal ones, and even ergonomic ones but it still hurts too much :( ❤️ Maybe you found nice ones ?

[@geenalizzi]

Sorry I can’t help, I just use the nhs issued pair with the shaped handles. Wish they were nicer to look at 🙈

[@Editz8021]

Omg I have the same top and also amazing vid keep up the good work ❤❤

[@chloesibilla8199]

I've learned something new today! Thank you!

[@ThePovertyPear]

Love to see the positivity you are putting out in this video, have a wonderful day!

[@robinhall570]

Ur such a BEAUTIFUL BRIGHT LIGHT and i'm GRATEFUL ur sharing ur story❤

[@stephengibson4419]

Great smile and personality x

[@Aziag123]

I have FND too! This is the 3rd video of yours that I've seen and I feel the same! My reaction is Grand-Mal seizures and I myself end up paralyzed after. My brain developed FND from extreme trauma personally, but it does get better if care is given. It is however exhausting when it "flares up" as I call it. It's a scary thing when it happens the first time, but also opens your eyes to so many things. You notice other wheelchair users. You notice elderly with leg and hip problems. You notice other disabilities as well. I am so thankful that I am not in my own wheelchair 100% of the time because when I see other wheelchair people I can reach higher things or pull them out of potholes or with doors. I like that you share about this condition. I wish we had more support for immobile or seizure prone people in the US. It took me 6 years to find someone that even knew what FND is. It's a very rare condition that still isn't entirely understood. So people instead of getting seizures, get other physical reactions.

[@mary5305j]

I am learning so much from your channel and really appreciate you sharing information alongside your personal journey through life ❤

[@joannewojcik.7631]

You really shine in that wheelchair you look so independent and able to do stuff with it 💜💜💜💛💜💛💜💛💜💛💜💛💛💜💛💜💛💜💛💜💛💜💜💛💛💜❤️💜❤️💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💛💜💛💜💜💛💛💜💛💜💛💜💛💜💛💜💛💜💜💛💛💜💛💜💛💜💛💜💜💛💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜💛💜

[@izzy7475]

My mum has FND and it’s good to see people educating others about this rubbish condition. I love that you’re taking about FND ❤

[@franthehorsegirl]

Your outfit is so cute

[@SylEd89]

Your so pretty!! You're going to inspire lots of ppl

[@IbbyRobertson]

I’ve been diagnosed with FND for almost three years now and your channel helps me so much thank you

[@nyxthenuisance6663]

I was diagnosed with FND when I was a baby but my whole life I've known it as Conversion Disorder. I've been using a wheelchair because of intense nerve pain for over 2 years and am reaching the end of highschool with a multitude of other health issues but I never realized that I had such a limited understanding of my condition until a doctor (a rude one for other reasons) pointed out I was using an outdated term. I didn't even realise how much more research had been done. I've looked so far into my other conditions like POTS, HSD, lasting TBI symptoms but I've never looked super hard into my FND and seeing you point it out and actually talk about it, not only makes me feel seen, but also makes me want to do more research about what people like me experience. Thank you so much for all that you do ❤

[@yellojolly7026]

i learned what the word psychosomatic meant while researching my own neurological disorder!! it references a condition or disorder that is heavily tied to your mental state, especially those that have symptoms triggered by stress

[@EmelineGee]

I am 14 years old and I just got diagnosed with FND two days ago. Loads of doctors told my parents that I was faking being sick during a seizure. It took one day for a paediatric doctor to diagnose me and I now need to use a wheelchair.

[@thatcatthatalwayseatsyourchees]

that just shows how important it is for doctors to be adequately trained

[@jesterrolli]

The thing is its logical that it can be triggered by stress because stress literally almost directly affects our neurological nerv-system(Dont mind and spelling mistakes or anything. English is my second language)♡I love your content and Im so happy and glad to see that some of you tics and such got less after you finished school and the pressure lessened for you allday live. I would also love to see some more minecraft content its really great to watch you play and engulfe in something you like while also feeling hapoy that we share interests. I love to see people have similar interests as me as I dont really come across that in my own field. Feel hugged and admired♡

[@Ducky_Lil]

Early plus I love the video and spreading awareness for different conditions also you are really pretty keep it up!! 🫶🫶💖💖

[@CharleighHuffhine]

I also have fnd and ngl I get kinda excited when I see someone else like me

[@RedmythsGaming]

Oh my! I finally found someone online that has FND too!! I was just scrolling through my shorts feed and you came up! It’s awesome to see other people who have what I have!! You are an inspiration!

[@KamillaMirabelle]

I simply love the energy you emit 🥰

[@MommmaT]

I have FND and Tourette’s. Mine causes seizures and numbness and affects my speech a lot. But I’ve been lucky enough to not have lost my ability to walk from it yet. Feels good to be seen!

[@Potato-fv9ns]

Thanks for spreading awareness. You are adorable btw!

[@ArsonTheShroom]

every time i see your wheelchair i smile it's just so pretty ahhhh

[@Dzeiy]

You are such a sunshine 🥰☀️🙌

[@akarioaks3328]

Wow. It feels good to see someone like me. I’ve never met someone like that. Thank you for sharing.

[@maggieo.513]

We need a wardrobe tour, I adore your style ❤

[@travelwell6049]

Thank you for taking the time to share and explain. I’d never heard of it until I came across your channel.

[@evafranco9855]

I was recently diagnosed after 2.5 years of doctors telling my it was all in my head. I just stumbled across your page and am really excited to see another person.

[@bunny2867]

Your style is so cool I love it :)

[@Thisratisrockin]

Aw I’m only just seeing this! But still thank you for the info :) unrelated but I have the *exact* same necklace and I absolutely love Lucy & Yak, especially the dungarees! It feels like they’ve become a real staple in the queer, ND, disabled communities in the UK and I just absolutely love that lmao they’re great

[@granny-nyan]

Thank you for sharing!! wlw unite! ❤❤❤

[@lesleyharris525]

Please bring your knowledge of your condition to us, i have never even heard of it. I have struggled with crps for 45 years. ❤

[@SilentSatyress]

I don’t have FND, but I do have POTS. I can empathise with some of the symptoms, and especially that’s it’s a mostly invisible condition. I’m glad there are places online where people with disabilities can feel heard and understood.

[@JengaPawZzZ]

I just recently got diagnosed with FND and I find it so relieving to finally know why certain things have been happening. But I’m also scared that there may be a day I have to go to school in a wheelchair… idk what kids at my school will say to me. 🤷‍♀️

[@KittyPurrBoy]

Never heard of that but I'm happy you were able to find a community ❤

[@EmilyEllis95]

I was diagnosed with FND 3 years ago mainly functional seizures. I was hospitalised as I was having 20 functional seizures in a day (twitching in my right leg and staring into space, it elevated my heart rate) the doctor in the ward said I could have been misdiagnosed with epilepsy for 21 years (at the time) then I was told again by my neurologist that it is epilepsy and FND so I don’t know at this point all I know is I have seizures. It’s so good having people educate others on this.

[@juliarose3826]

Love your outift, the overalls are so cute! Lovely informative vid, I hadn't heard of FND before

[@orion.the.pathman]

omg I didn't realise they made docs with zips on!! I haven't been able to wear my docs in ages because I haven't had enough strength in my hands but I'm definitely going to look into zipped ones

[@ashrowan2143]

I think you can also find zip replacements for shoes, you would lace them into the eyelets once and the shoe now has a zip closure in place of laces. I'm not confident on where you can find them but I have seen them

[@Lizard4678]

Love your outfit 🌈

[@ash_st0le_ac3]

I love your outfit. it looked so amazing

[@freddie.spaghetti]

thank you for telling us about it! 💛

[@KirRomanov]

I think I might have FND but I’m unable to get diagnosed because my parents don’t believe me. I have seizures, weakness, balance and mobility issues, sometimes paralysis as well aling with fatigue, pain and memory loss. I wish I could get tested, life without a dx sucks. Same with my tics (not functional, prob. Tourette’s but also undx). I have to pretend I’m fine all the time when I’m in pain, just out of a seizure or quite literally can’t walk. I can’t explain the loss of control over my bladder and it’s really embarrassing to not have a reason for being this way. That said, your content has helped me a lot with accepting myself as I am, no matter what anyone thinks. I’m (almost) proudly disabled thanks to you. Thank you so much, Zara.

[@thatcatthatalwayseatsyourchees]

I hope it gets better, stay strong mate

[@sitting_ina_dark_room]

I don't have a disability, but thank you for telling people about FND - I didn't know about it much! ❤

[@zoefs1249]

I have the same star pillow!!!

[@Iris-Bab6]

I have FND!! Where can you find the communities? I don't know no one else with it 😢

[@saltydinonuggies1841]

I’m pretty sure there’s a Reddit dedicated to fnd, though I don’t have it so I haven’t looked too deeply myself. I wish there were more irl spaces for disabled peeps to meet up and hang out.

[@thundergrowl]

You should've seen my face lit up as soon as you said fnd. I've been diagnosed with it almost 2 years ago now and my parents still deny it. It's been so hard for me. I'm glad to see that I'm not the only one with the disorder

[@dotcassilles1488]

I hope you can find someone who believes you and who will listen. I hope someone says to your face "I believe you".

[@thatcatthatalwayseatsyourchees]

I believe you

[@thatcatthatalwayseatsyourchees]

no but seriously, i hope you find more accepting people to be with in life

[@jerrybutler605]

Subbed to this. This is something new to me so I am interested in learning about FND.

[@stargirl6419]

woo my brother has this only we new it as conversion. he has had the same things you have. only it stopt after he got to relax but its still bad. this helps definitly to understand his condition more. he is also autisic so its quite hard for him sometimes. thank you

[@Ash3r_Is_Alive]

My mum has FND, and she gets twitches quite a lot, like we could just be sitting down watching a show and her legs, arms, etc could just twitch

[@asymphony685]

Can you please tell where you got your chair please I’ve been searching forever to find one like that ❤❤❤

[@Pepper-yw5do]

I’ve never heard of FND before, but I want to know more. I actually might need to look into it because of several unexplained medical problems i have (such of frequent loss of consciousness, temporary paralysis, and random muscle contractions) that I’ve tried everything to treat. Could you possibly talk more about the diagnosis process? I don’t want to self diagnose, but I would like to look into FND. Thank you so much!!!! Love ur outfit btw

[@p.brooke]

1. Do you ever find it affecting your arms? If so, do you have mobility aids to help with that (since you need your arms for most mobility aids)? 2. Where does FND come from (like is it genetic)?

[@DanPurdy1]

Thanks for the explanation. I am really glad for you keeping us up on your conditions. Some knowledge does help/

[@bunnymoore6747]

I have FND that leads to bouts of total leg paralysis, which can only be resolved with over a year of intensive PT and using a machine to cause repetitive muscle contractions. Mine is set off by illness (Pneumonia, COVID, ECT).

[@bluuberrylikespeanutbutter]

Holy crap thats an adorable outfit where did u get it

[@koala.0916]

Hi Zara 👋🏼 My son has FND. We're in Australia. There aren't many people who have this condition and it's hard to explain it to people. So glad we've found your channel 🥰 Oh and LGBTI+ represent 🙌🏼

[@lastlaugh.]

I wish I was brave as you.

[@axolotlsave5712]

Happy FND awareness day ❤❤🎉 your channel is like my comfort place 😭😭 also can we stop all the homophobes in the comments😢

[@mikest.germain5083]

My ex wife had essential myoclonus with dystonia....its horrible we had 3 children together all did not gain her disabilities but its a male dominant gene. I applaud your videos.

[@shortea7892]

This is so interesting. I hadnt heard of it before and might learn more of it by giving it to one of my characters that I write to motivate me to learn about stuff. The character currently has a vague disability. Chronic fatigue and uses mostly a cane but sometimes swaps to using a wheelchair.

[@tatiana4050]

How do you manage with manual wheelchair? Isn't it heavy on your arms?

[@Zara_Beth]

it’s super light so on smooth floor it’s easy to push!! generally my FND affects my legs so unless there’s a hill (someone would push me, my chair has flip up handles) then i’m fine ☺️

[@jmg999]

Happy FND Awareness Day! :)

[@FronteirWolf]

I don't know if I have it. I get psychological paralysis, but it's for less than an hour at a time. I can also have milder issues like my legs feeling like lead, which goes on longer and can keep ,me from going out if it's really bad. I know I'll be safe but walking is a chore. I get it more frequently when my mental health is worse, spent a lot of time on the floor when I was in a mental hospital unable to move, the staff left me alone, which was fine as with time I would be able to move again, I didn't need people fussing over me until that happened.

[@ALDCBoulevard]

I had similar mental health issues as you, I used to have problems with catatonia. They tested me for seizures and did scans, and eventually we figured it was my bipolar and gad causing my mind to basically freeze up my body. (I have bipolar 1 w/ psychosis if that makes sense). I sometimes wonder if it was fnd, especially since I now have fibromyalgia and many symptoms overlap

[@Mewl22]

I have cptsd and athsma and I had a lot of health problems, one doctor I went to said I probably had FND and described it as “tik tok turrets” got sent to another specialist and finally released I just couldn’t breathe, and cptsd causes a lot of physical symptoms like being sick frequently hey doctors if you don’t know what’s wrong, just say so! Don’t be weird :,)

[@airohtheenby]

I live with a couple neurological conditions, but I have not heard the term FND before. It made me wonder why the functional is added? Is it because it effects function? Because my conditions definitely make me feel dysfunctional sometimes, but it also seems like FND would apply to me

[@karafoley1693]

My son has DMD and ASD he is 16 and in a wheelchair bound for life when he was 10

[@stjepansavic4485]

Broooo respect🎉❤

[@cristinarivera755]

God Bless You Protect You God Loves You!

[@Liam-hy4ok]

I actually did not know this illness existed until this video... Happy Visibility day!

[@Tooth4tooth]

Ily❤

[@tobenamed144]

I have so many questions about FND, do u know if there is a connection between autism and FND? How are they affecting each other? And btw love your content ❤️

[@spikey420]

hi! so from what ive read, alot of people who had FND in a survey also scored high on autism traits/symptoms so there may be a link

[@lillianblack8749]

Hey wow look at that someone using a wheelchair even tho they can technically walk. I need people to understand this cause I am terrified of using wheelchairs while young and technically capable of moving but I deal with so much pain.

[@joy363]

Hi! I recommend reading about FND if you're confused with how it works instead of belittling people's conditions & symptoms. Being hateful doesn't help anyone.

[@ashrowan2143]

It's wild that so few people understand it considering most wheelchair users are ambulatory users which means they can walk and sometimes will choose to walk rather than use their wheelchair

[@MIA80073]

HOW DID I MISS FND AWARENESS DAY 🤦‍♀️

[@Zara_Beth]

international fnd awareness day is the 13th april!! ❤

[@lizsholer4615]

I have fnd and people keep telling me I just need to be calm and I won’t have seizures smh 🤦🏻‍♀️