Why is Functional Neurological Disorder so poorly understood? | Steph Blanco | TEDxBrayford Pool
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- Опубликовано: 12 ноя 2023
- Functional Neurological Disorder is the second most commonly diagnosed condition in neurology, so why is it still poorly understood? Neuropsychology lecturer and doctoral researcher Steph Blanco shares her lived experience and research on the condition. She says; "I am not special or unique for finding these things. I firmly believe that those before me would have found them too if only they had stopped and looked and listened to the real lived experiences of those diagnosed."
Steph Blanco is a skilled and compassionate neuropsychologist dedicated to understanding the intricacies of the brain, body and cognition. With unwavering passion, she has devoted her career to conducting research and giving patients with “hidden conditions” a voice. Stephanie-Roxanne is currently a lecturer at Bishop Grosseteste University, completing her PhD at Nottingham Trent University and is Vice Chair at FND Dimensions. With a strong academic background and extensive research experience, she brings a wealth of knowledge to her practice striving to improve the lives of individuals affected by an array of disorders, empowering them to lead fulfilling and meaningful lives. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
I stand with you on breaking the stigma surrounding FND. I was told the exact same things, “it’s all in my head” and that, “I am doing this to myself”. Who in their right mind would want to do this to themselves?!?! Have their whole world turned upside down. From going to living my best life to just existing 😢. Thank you so very much ❤ for advocating for all of us that suffer from this debilitated disorder. Sending you all of my love to my FND sister/warrior 🧡💙🧡💙.
I'm sorry to hear that you experienced these comments too. This TEDx Talk was the hardest thing I have ever done - to sit with my own story, to relive those comments and those moments. But if it can change one person's opinion or if it means our community has a voice then I would absolutely do it all over again! Thank you for commenting and sharing your experiences fellow FND Warrior! I stand right alongside you ❤
@@EffieBNeuropsycology I can completely relate to you on reliving past medical experiences 😢💔. I am so proud of you! Sending you a virtual hug 🤗.
When I'm told "It's all in your head" I use to answer, "Yes, of course, since the brain happens to be in my head, not near my stomach" 🙃
FND is a genuine neurological illness. I wish you all the best 💙
My daughter has been told the same thing since her symptoms started over 10years ago. 18-24months ago she finally got a diagnosis of FND. She has other physically obvious “problems”/issues/conditions too, non epileptic seizures amongst them. She also had glandular fever when she was 12, a particularly debilitating episode that lasted 9months. She seemed to recover after that, but after a particularly traumatic & abusive relationship and a bad accident at work, her body stopped functioning. Paralysis, loss of speech, and then many months of suicidal thoughts, that then swing to hyper-mania. It’s been traumatic for us all, but for her (obv) devastating, her life was shredded and getting support for her, her 2 little girls now 7 & 8yrs old and a suitably adapted house she can negotiate safely has been an ongoing nightmare, not yet over, we’re still fighting for her to be adequately, safely, housed. I am also physically challenged (& nearly 70) so cannot give her the practical, physical support she needs, and I so badly want to give her. I could (& often do) weep with frustration and deep sorrow for what she, you and all other sufferers go through. Thank you for your bravery in talking about your struggle. Your story is so, so like my daughters. Best wishes, from Annie, in Cornwall. 🙂🌸
how are you doing today? Do you take any meds?
A wonderful talk, after going through a bad drop attack falling backwards down a flight of stairs & ending up in the care of the NHS I have again came out of hospital worse than when I arrived because of the unethically poor treatment received by medical professionals! I feel lost, through many failed attempts of poor treatment it’s not a stretch to suggest they have caused a mental health crisis when dealing with doctors who don’t know how to treat it. I wish I had a contact to speak to you. Awareness is key for people like me who are on the whole completely misunderstood.
Thank you, for giving a wonderful talk ❤
I'm crying, I am so happy to see a Tedx Talk on FND. Thank you Steph!
Thanks so much!
Thank you for standing up to dispel the myths about FND🤗 I was diagnosed with psychogenic non-epileptic seizures 4 1/2 years after my epilepsy diagnosis. The lack of awareness, ignorance, limited research adds to the stress. Frustrated by this, I'm working on a book describing life living with both conditions. Thank you again for sharing your story and the important research you do.🤗💜
Psychogenic means coming from your mind so does this mean you recognise FND to be a psychosomatic problem? I
I have never seen anyone talk out my illness before, thankyou for fighting for us ❤
You're welcome! ❤
I'm convinced that chronic inflammation holds the key. My first symptoms started after a series of infections; my ESR was raised for a number of months and then one day I woke up with horrible dysesthesias all over my torso. 6 months later, after my 3rd Covid jab the same pattern started to emerge - inflammation, temperature sensitivity, problems sleeping, ESR raised again and then bang! I went to bed one night and woke up a different person. I wouldn't wish this condition on my worst enemy.
Given that I've just done a whole big project on inflammation in FND.. I hope so too 😉
I was diagnosed with FND in Febuary 2018. I describe it as my brain malfunctions, and I tell people I have a disability. Its hards for people to understand how I can be fine one moment and have difficulty talking, walking, or moving the next minute. Fnd changed my life, but it also made me stronger. I accomplished many dreams after I got diagnosed. I have a career in Health care and i tell my coworkers about FNd to raise awareness.
People with FND are always the most resilient people I've ever met! ❤
Thank you so much for your insightful talk and hope of recovery. At 43, my life (and that of my family) has been turned upside down and inside out by this condition, almost overnight. Progress has been so slow, it would be easy to give up, but I am determined to get my life back. I know that probably won’t come any time soon, but this is a marathon not a sprint. I have shared this, thank you for spreading awareness.
I agree with everything you just said - and just a year younger too! I like what she said about time and patience. We will get there 💪🏼
I got my diagnosis around the age of 42-43 (I'm 45 now) and I'm with both of you 😁🤗
I'm thankful for the video and have shared it too 😁
Mine presents as weakness. It's like a Cinderella effect. I'm good and then I shut down. Like someone has turned off a switch. I can hear you and I'm conscious but to anyone looking at me, I can't move or speak. I can't open my eyes or respond in any fashion.
In my worst case, I can feel the weight of my breath. I resemble someone about to die.
In my usual case, I need to lie down and get energy again. I also have slight cognitive impairments that prohibit me from reading and working.
The most uplifting and demoralizing part of the condition is many of us have cycles so we have to keep reliving the same thing.
So every spring and summer, I get more mobility and every fall and winter, I lose more of my mobility. I have to readapt everything in my life and for these ebbs and flows. Every year I get marginally better but it's still heartbreaking to have to go from feeling close to 'normal' and then going back to square one.
Glad to see the community here
@@LeiaBranagh oh I know how you feel! I can be just like that, feel mostly normal but then it's like flicking a switch and muscles start to contract which effects my voice, mobility and my eyelids want to close too. It's not as extreme with me that I can't override each muscle's contractions but it's a huge effort to do so. It really is so helpful to hear other people feel the same thing and know just what we're going through. It's so hard to describe to others who have never gone through it, and in some ways it's harder when they might see us on our more 'normal' days because they think we're better, but the next day, or hour even, we can be back to that awful state! Frustrating! I wish you well with your health and hope you and all of us make some progress, however slow and small x
@@yorkshirenome Yes 💯 it's so nice to talk with people who get you. 🤗 I hope you can enjoy and remember your victories no matter how big or small and know you are not alone 😁
@@LeiaBranagh 💕
I’ve been fighting through life with undiagnosed FND for a decade and a half - half my life. Only got diagnosed in the past year after the seizures cost me my job, not to mention my hobbies.
Thank you for the work you do. I had no idea FND showed up on brain scans, because none of my doctors saw anything unusual. I’m lucky they told me about FND at all instead of writing me off. It’s nice to have a lead so I can dig deeper.
That’s false . It doesn’t show up on brain scans .
They tried to diagnose me with FND .
If something showed up on your brain scan you need to get a second opinion and get one right away . I got a second opinion and I have Dystonia and I am on Parkinson’s med .
That’s how idiotic this diagnosis is .
You cannot trust this FND to save your life .
FND has been misdiagnosed for MS .
See another Dr and get second opinions until you get a proper answer not this one .
This is absurd.
I went to a University to have my care and they did not tell me FND .
Be your best advocate and only YOU know your body . ❤
Thank you for this. I’m in my final year of training to be a Speech Therapist and I was diagnosed with FND in my first year after a severe bout of tonsillitis. I’m lucky that my symptoms are ‘invisible’ most of the time, and I can pretend I’m able-bodied, but the pain, fatigue, temperature regulation issues, migraines and many other symptoms are there every single day of my life. Thank you for helping us feel seen. It is not in our heads. It is real and it is debilitating. Thank you x
I'm sorry to hear about your journey and your symptoms! It's difficult to continue but I hope like me you find some things to help you along the way. I also hope that you're able to use your chose career to support the community! Do get in touch if you'd like to chat further - speech therapy in FND with therapists who get it is so so important!
I was diagnosed with FND just last year in September. It started with every so often my arm was shaking a bit, not too note worthy but I did notice. Over time, when it did happen, it got worse and worse until one day I got home from school with non stop shaking and had to be taken to ER. My grandmother didnt believe me but luckily my aunt is a nurse and she was the one who took me. I ended up having a seizure and had to be run up to a bigger hospital. Thankfully, I was lucky enough to get a fast disgnosis on day 3 of being in the hospital. I couldnt get it on day 1 or 2 due to being out of it and unable to remember anything of those days. They said it was caused because of stress due to having to suddenly move away from my home after we lost it. I was lucky enough to be diagnosed with Functional Tremors when it could have been so much worse, though my grandmother still didnt believe me because it wasnt happening all the time. I was able to gain alot more control of it over time and its much easier to deal with now, but when it does I still get people staring at me like Im insane. Its still really hard to find anyone who can help because its just so hush hush just because of the idea behind it. So many people dont seem to even know what FND is despite so many people having it, so thank you for spreading awareness. Its so validating to those of us who go through being judged or looked down upon every day. And thanks for letting me share!! All the love, everyone. Your condition doesnt define you, you can become something great despite your disability.
Thank you so much for sharing this 😭 I am about a year into my FND journey and looking for more support and help. It is an absolute nightmare to live with this condition and so frustrating that there is also so much stigma around it. Let’s keep fighting, thank you for all your work, and this talk was amazing!!!
Thank you so much for this comment! It means a lot! I'm glad that my experience reasonated with you though I'm sorry to hear that you've had to go through it too
@@EffieBNeuropsycologyI have cerebellum ataxia. Anyone can help
I feel short of breath when speaking. Anyone can help.i am still swallowing. On wheelchair.
We are so inspired by Steph Blanco's story.
Wow! Thank you! Do get in touch becuae I absolutely have more ideas and it's a privilege to have been recognised and acknowledged by you!
Fantastic talk. I will be sharing to give friends and family something to watch to understand FND better. I was in tears watching as you were describing my life. Not from 14 but from a 47 yr old. Thank you🎉
Thank you! My goal with this talk was to not only share my own story, but also to share the story of others. I'm glad that you felt that I had done just that. This comment means the world to me - thank you for taking the time to view, share and comment ❤
Yes, yes YES! You deserve a standing ovation for this! I have sent this video to ALL of my doctors and posted it everywhere with the simple caption - "the best explanation of FND EVER." Thank you for saying what I have been trying to say in a way that can be understood!!
This comment brought tears to my eyes. Thank you!! 😢
@@EffieBNeuropsycologywell, if they're tears of joy, then by all means, go ahead, cry away! 😄 After hearing so many stories of people with FND and their struggles, their continuous disappointing and unproductive (and sometimes humiliating) visits with doctors, as well as my own personal struggles, I decided to do something about it. And I think your video gave me the extra umph that I needed to actually put it in action (maybe by the hundredth time of watching it). I am now almost "official" as the nonprofit called Not Defined By FND, and hope to start an FND wildfire, not only in the US, but around the globe!! Thank you, again, for your bravery, your inspiration, and for reminding us ALL that THERE IS HOPE! Thank you for standing with the FND community and continuing to speak for us and beside us! ❤
I recently got diagnosed with FND after over 5 years of symptoms. I got gaslit saying “you’re just autistic and anxious” while I was suffering symptoms that didn’t fit at all. I get a variety of symptoms and they’ve essentially ruined my education and my life. It’s so debilitating. Currently writing this in an episode. Loads of people think I can get over it if I get on with it but it’s far from the truth 😞
I'm sorry that this has been your experience 🥲 the things that people are told is unreal. This is a fight against your own neurons and that is not an easy thing to do!
@@EffieBNeuropsycology thank you. It’s like how am I supposed to combat something when I have no control over myself at all. It sometimes feels like an out of body experience 😩
A line I missed from my talk was "people are fighting their own neurons - they do not need or have the energy to battle you too". I stand by that statement!
@@EffieBNeuropsycology That’s so important. Thank you 🥰
@@EffieBNeuropsycology
Thank you. I loved that you came into the conversation with the brain and the body. And wanting to help in this process of learning to help and heal without the stigma of the past view of the FND history 🙏🏼
Thanks so much for speaking on this! I'm living with FND too, and it's so nice to see this acknowledgement!
This was a great talk... My mum used to work in the kitchens of a school she was for all intensive purposes a fit and healthily 58 year old.. Then overnight she developed tremors in her legs and sounded like she'd had a stroke.. The hospital did every test on her but they all came back normal, but was diagnosed with FND. Now 2 years later she looks like an 80 year old dementia patient.. and has just been left to carry on with almost no support except anti depressants and a little counselling
I'm sorry to hear about your mum's journey and experience. I hope that you're able to provide support and get her the professional support she needs x
I was diagnosed with fnd two weeks ago and the doctor also told me am faking and am loving hospital attention its nice to know am not alone
I'm sorry that this has been your experience. I hope you find the support you need but please know you're not alone! ❤
It’s wonderful to see a TEDx Talk on FND! Thank you so much for doing this talk!
My husband has had FND for a year.
Now I’d really like to see TEDx talks like this about the condition I have which is also poorly understood and disbelieved in the same ways!! It’s Multiple Chemical Sensitivity. It’s every bit as debilitating as FND.
Thank you so very much for being a clear voice for those of us with FND, when so few medical professionals are afraid to listen.
I'm surprised I sound this clear! My voice was trembling! Always standing with you :) no matter where I am on my own journey
Wow! This talk is so inspiring! Thanks for sharing your journey and for starting this conversation. I hadn't realised how many people had not heard of FND but I hope that people outside of the community listen to us now!!
Thank you so much! 🎉
This was a brilliant talk (I was in the audience). Well done, I learnt a lot.
Thanks Craig! Thanks for being there too and for the support!
Brilliant and informative talk , and first Ted talk on FND, well done Steph Blanco you are an inspiration! 👋👋👋
Thank you Tom for all of the kind words! 🥰
Spot on - excellent Tedx presentation!
Thank you soooo much im in tears because for 7 yeard i thought i was the only one, this is the first time ive heard someone say how i have felt. Its been so hard and so lonely and painful. I didnt know fnd affected the eyes becsuse my vision went first then paralysed from chest down but they never linked them together. I was laughed at in the hospital when i told them i could not see any of the letters. Thank u thank u thank you.
I'm sorry to hear your story! But thank you for feeling that you could share it along with mine
Thankyou so much I've only just been diagnosed and I'm scared x
I live in the US and was diagnosed on my birthday with FND with Multi symptoms, I am completely lost and my symptoms are rapidly increasing daily!!!!!
I'm sorry to hear your story but thank you for adding your voice to others on this video x
Can totally agree with everything in this video, thank you for sharing! Have a great day! I was diagnosed in March 2023
Thanks for commenting! Sorry that you were diagnosed too but I hope you're getting the support you deserve ❤
@EffieBAndNeuropsycology Thank you, to some extent but just seem to always be brushed off as it's "just epilepsy" as I'm epileptic as well then put on even more medication I'm going to see my neurologist tomorrow so hopefully will get some answers and stop being brushed under the carpet as this is how is feels its awful 😖
Thank you, and YES, YES, YES, YES!!! You said everything so clearly and powerfully. Having the space to be heard and believed goes such a long way.
I was diagnosed 2 months ago after living for 2 years with debilitating symptoms. I still am getting new weird & random symptoms and am just trying to figure out all my triggers and also exist in capitalist society while not being able to work.
My partner is so so so supportive and things are looking up for me in terms of finding my creativity again. I am pretty sure I will never be the same as I once was - there is no way I could be, even if every single symptom went away tomorrow. However, in many ways I feel that I am more than I was before because of the sheer amounts of strength I have had to draw upon to survive my FND symptoms.
Sending big love to my fellow FNDers and all of the people who love us. ❤❤❤
Great TedX talk!!!!
Thank you, again!!!
If you're in the UK FND Dimensions do some wonderful things with creativity! Creativity and the arts have such a healing power and I hope that you can find yourself again and maybe even some healing through this.
After 2 years of crazy testing for persistent fainting/ seizure spells that started very suddenly. My neurologist told me about fnd and honestly don’t know how to feel, at first I was happy cause it was a diagnosis finally! But now, feeling discouraged over how it’s understood and stigmatized
It's a perfectly normal reaction to this diagnosis! Of course it's great to have a name, but sometimes it feels that this alone isn't enough! Support groups for me have played a huge part in my journey and helped me to find answers that I couldn't elsewhere. As well as being around others who got it!
Thank for sharing. It helped alot. FND can be a lonely place❤
I will like to thank you for your voice with people that have fnd i have fnd and has been so hard for me lost my voice to and never understood what was going on it is really hard to live with fnd but I am happy to hear from you and your experience with fnd so thanks for sharing your video with all of us that have fnd
Thank you for sharing your journey too ❤
Thank you! I have also had a doctor, after all my tests came back looking normal, telling me "There's no need to diagnose it" and "just avoid doing the things that trigger my symptoms" and refused my request to refer me to other specialists. I had a sense that he didn't understand and didn't care and didn't even bother to fake it. I really felt that I'm the only one to help myself. Fortunately as I was doing research I found there are others, and there is hope. And regardless of the not-so-uncommon "rare condition", when I see articles about it, it's still introduced as some "rare condition" that's far far away from everyone. Yes, unless you have this condition. I'm still in the tunnel and haven't seen the light from the other side yet, but at least I can start moving. It's not that we are seeking attention, but our brain is trying to remind ourselves of its existence and seeking our attention and care. Thank you very much for telling everyone that it's actually quite common, and it needs more attention.
I'm sorry to hear that this has been your experience. Treatment should really start with a kind and thoughtful diagnosis. I hope you're able to find support in some form but accepting this illness can be a tough thing to do. It sounds like you're taking all the right steps - stay strong ❤
This has really opened my eyes regarding FND and I wish you all the best for the future x
That was a very good presentation! I’ve been diagnosed with FND four years ago and I’m still fighting this illness every day. I’m always willing to explain how FND works to people. It’s very important that FND will loose it’s stigma. I’m blessed to have doctors who just accept FND as it is. Maybe it helps that most of the time, doctors have never heard of it. I will just explain what it is, and they understand me perfectly well and act to it accordingly.
That is wonderful!! Can I ask how you explain it? I feel like I have a hard time coming up with a quick and accurate explanation and people/drs don’t always respond well.
So inspiring. Recently Diagnosed can't get head round it ATM. Feeling not believed by family even the doctors. We all need to be educated on this. All my spare time im trying to learn what changes I could try. Iv heard from so many fnd warriors everyone I know that's suffering from this. They all have a different story & different symptoms. Medical board needs to push this in there doctors education . Every Dr physio Ot. Neurologist i personal had to see all said the same. Thing. Don't know nothing about it. Or if they have not been educated on it. Not sure how to treat it. My own Dr keeps wanting me try all these different meds that he not even sure he to treat. So why would take meds from Dr. When he doesn't know how to treat me. Iv learned from own digging & my councilling team than I have of the medical side. Keep fighting this FND warriors x
Thank you for sharing your story too! It takes time to wrap your head around FND but you already seem to be an excellent advocate for yourself. Keep fighting fellow FND warrior! I stand with you ❤
What an amazing talk, and an amazing person. Someone very close to me has been through all of the things you have said, the disease, the disability, the stigma. Thank you so much for sharing and raising such important awareness ❤
Thank you! Though I am sorry to hear about your friend. Thank you for being a supporter and for believing them!
Amen! *Folds hands* Thank you I have tick like behaviors, no control over body movement when they go off, I have a hard time even standing, head twitches up along with my eyes, little small yelps really embarrassing but I continue to practice my martial arts.
one thing a wonderful trauma surgeon who's a good friend of mine stated that helps is to keep focused on a task and focus only on that task including meditation through it control your breathing being mindful on only that your inhales and exhales.
Sorry to hear about your journey but I'm so pleased to see so many adding their voice to mine here. I totally agree distraction tasks can be a huge help
My daughter is almost constantly tic-ing with weird body contortions. Local neurologist is sending her downstate to an epilepsy clinic. (She does have a history of abnormal EEGs, about 15 years ago- recent EEG showed no seizures in those moments). I don’t know what to do to help her! Appointment in January 2024 is our only hope. She is suffering with these almost constant seizure like episodes!
Sorry to hear about your daughter! Tics can be a symptom of lots of conditions. The brain and nervous system are that complex that they can become so easily dysfunctional. I hope you and your daughter get answers soon!
It could be demonic possession like I have listen to Quran ruqya
Thank you very much for being a voice for us ! 🥲
Thanks Steph. I was diagnosed 2 years ago. My consultant neurologist was very sympathetic/empathetic, but due to government cuts there are no treatment programs available on the NHS in the UK. There is no NICE treatment pathway either so prognosis is as long as a piece of string and as a result my pension scheme didn’t want to pay out in full.
Thank you for your talk, an inspiration to those with and without FND. It is the most bizarre and unsettling thing and, as you pointed out, the medical community is inconvenienced because it does not fit into a tidy "diagnostic box." Thank you for raising the awareness of FND and I hope eventually meaningful research can occur. Thanks from Canada. 🧡
I'm working on more research right now but a further continued frustration is how long it takes for research to influence clinical practice. Let's hope that conversations like this are the starting point for meaningful change - it's about time! ❤
Thank you for you Voice 🙏🙏
My 9 year old daughter was diagnosed with FND last year after a four year long fight and the paediatrician we are still fighting with as she thinks it is a condition not to worry about
Sorry to hear about your daughter! It's difficult when you're fighting with consultants instead of having collaborative relationships
I only found out i had it by accident. My doctors never said a word just tests i had for what was wrong at the time had come back clear.
Fast forward to being referred to a neurologist for tests because i had lost feeling completely in my right leg. The neurologist talked to for ages n said its part of your fnd??? Ii had to ask him what he was on about as i knew nothing about it at all. Hhe said you was diagnosed 10 years ago with, surely someone must have told you. I was in total shock, not the first time doctors withheld information from me.
I was so happy to have a name for what was going on. No explanation or advice, just yes you have fnd and that was it.
I'm sorry to hear your journey! It was very much the same for me I'm afraid, I was told in passing by a nurse. Once I found out I had FND I then consumed everything I could on it. I searched and researched to find others with it.. fortunately/unfortunately it seems that there are now so many and so much information but its still so disheartening that despite this, many people have never heard of it!
I’ve struggled with FND symptoms since 2013 and functional tics since 2020. I didn’t get a diagnosis until just over a year ago as a result of the development of functional tics. I was only fortunate enough to get a diagnosis because my new neurologist had actually worked in Scotland for a moment and as a result, the American VA healthcare system can only provide me information from the Scottish government on FND because it’s not studied as well in America, which is why it took just over 8 years for me to get a diagnosis. When it all started I had a neurologist ask me what diagnosis I wanted, migraines or epilepsy? I told him I just wanted to know what was wrong with me.
Wow you were offered a choice of diagnosis. I'm sorry to hear of your experiences! But I do hope that you are now getting support
@@EffieBNeuropsycology yeah, after finally getting the diagnosis of FND, I did get the appropriate therapy and support. Has made life so much more tolerable. Thanks!
Can I ask if the development of tics started after covid or the covid vax? I was perfectly healthy and soon after my 1st covid jab lost my ability to walk. After several incorrect diagnosis finally diagnosed with FND. Just wondering if the vax or disease could be a trigger..@Owlberightback
@@rohinihyde4766 no, they started after I had my last episode of my original symptoms (aura followed by dysphasia for a short period of 5 minutes to 3 hours). After that episode I developed severe hemifacial tics and neck tics.
@@rohinihyde4766 but yes, illness can trigger FND in some people
eu sou do Brasil, faz sete anos que sofro e ninguém sabe o que eu tenho, agora sim fui diagnosticada e estou esperançosa ;)
The attitudes of medical professionals to FND is exactly the same as it is to ME. This is another illness that is misunderstood and thought of a hysteria as it affects mainly women.. It isn’t, they are finding differences at the molecular level. I hope the same happens for FND.
An incredible story and such an important conversation to hear. Well done on all your work in this field.
Thanks so much!
I've been suffering from FND for nearly 40yrs and only got diagnosed 8 months ago and not only can I hardly even talk about what I've been been through especially what Doctor's have done to me but since I've been diagnosed not a Doctor within 200 miles of me will have anything to do with me. I'm told it's totally hopeless and I'm on my own so go away!! I live in central Minnesota n that's from the Neurological Department of the Sanford clinic in Fargo ND. I'm painfully Serious and my phone barely works anymore n I have no money to get a new one because I can't work and I'm so exhausted I can barely go on!!! I just need one human being who actually cares and there literally r None not One. They won't even answer my phone calls!!!!!!!!!!!
I'm so sorry to hear about your journey and your experiences. My heart goes out to you!
I'm sorry this is the response you've come across. Please try asking for help from psychology services. You do deserve help.
Thank you.
Thank you!!
I was diagnosed with fnd on my birthday last year,, i have never been the same. I have recently listened to an audio book titled "The divided mind" look it up,,it seems to speak a lot of truth to me atleast 🖤💜🖤 much love to all and thank you..
Never heard of FND before, then suddenly 7 days ago, I went to get out of bed but extreme debilitating pain and crunching in my low back shot through my spine, not stopped by my neuro spinal pain stimulator implant and suddenly I could not walk or stand only static bobbling. Only all tests scans etc did not find a cause for the symptoms or source. I was told I have FND it’s all in my mind, when I decide to walk again I can, as if I was doing this on purpose, even assumed by ER Dr I was seeking drugs, when I have left overs from past 4 surgeries that I still had practically full pill bottles and refuse to take, because I hate to not be sober minded. I felt dismissed, discredited, blown off, and borderline hopeless. I’m still in the hospital and finally approved for acute therapy rehab. I’m determined to walk again, even through the pain of preexisting spine diseases. TY for braving this mysterious disease, and to go on TED to reach out to people and make awareness possible, the stigma is overwhelming nearly unbearable and you inspire me
I'm sorry that this has been your journey but even the comments section, as well as my talk, shows just how common a story this is. Something has to change in medical circles! The amount of comments that are here saying "me too, I was dismissed/discharged/disbelieved" only makes me want to do more. There are some fabulous support communities and registered charities who do advocate and support those with FND so do please reach out to them. You're not alone ❤
Full of information
Thank you!
@@EffieBNeuropsycology welcome!
I wish FND was understood better.
Thank you for a very interesting talk. I was a very fit 68 year old. Two years ago I took my 1st covid jab and a few weeks later lost my ability to walk normally. After 2 years of testing have finally been diagnosed with FND. Could the covid vax I took have acted as the cause of my FND specially as it is now banned in most countries being linked to blood clots and neurological diseases.?
There's lots of triggers for development of FND and I would argue that the triggers are so complex that its often hard to pin it down to one moment or event. Usually it's a combination of things and fortunately risks from vaccination are rare. I am sorry to hear about your illness journey but I hope that you are recovering
When people who got covid vax damaged the symptoms were so similar to mine and I believe it caused FND there were too many cases
It's the same for me but I think it could have been any vaccine not just covid. Just too much of a shock for the body at that point. I hope everyone with fnd and similar conditions can and will heal and the treatment gets better soon ❤
Thank you so much! This is exactly what I needed to hear after 4 years of being dismissed because of my FND diagnosis.
Have other people with FND had major improvements with steroids? Steroids (i.e. oral hydrocortisone) seem to be a catalyst for improving all of my FND (and GI) symptoms. In my case, this was an incidental finding because high dose steroids were given during Covid because of adrenal insufficiency.
Steph, I have some questions. You mention inflammation in your talk. Is inflammation a cause of FND? Could steroids or other anti inflammatory medications be used to treat FND? Is there research going on into the link between inflammation and FND?
Thank you for the kind words. I'm not sure about steroids but equally if it's working for you then it absolutely is the choice for you. Importantly I do not feel that there is just one solution for everyone, everyone's journey will be so unique!
I've just completed my first studies into Inflammation with FND for my now submitted PhD. Hope to publish soon and explore other areas :)
I had doctors say that iwas faking it at 47 why would i want to fake this.
I was diagnosed with it because of my PTSD
100% right.
Ive basically stopped going to doctors and the hospitals because of how iam treated....
Fantastic talk!
If you would like any support with learning to ride a bike, please reach out.
Absolutely yes please! I'm now riding but not as proficiently as I would like and my balance and spatial awareness are still areas I am working on
Still frustrated that so many different symptoms put under same title. Has to be more
The brain is unique and that could be a reason why the symptoms can be so different. Many believe that a mechanism operates among all FNDs. My current work is exploring inflammation as an explanation for this.
@@EffieBNeuropsycology I have progressive myoclonic epilepsy, which has affected my ability to walk and recently talk clearly. Has progressed from 80s (jr high to menopause) but a neuro tagged on FMD due to negative blood tests. Doesn’t seem right, especially since 6 day video EEG showed epileptic seizures once they tried to ween me off anticonvulsants. I guess I’m more frustrated at getting that added on in 2018. Regular neuro ignores it since PME diagnosed at Mayo in ‘92
Lumping together bowel & bladder issues with NES, paralysis, speech problems of various sorts, and everything else it just seems like anything with normal scans and tests could be tossed into FMD.
Have watched many RUclips Q&As with Dr Jon Stone & Professor Mark Edwards and they talk about diagnosing via positive signs. They make more sense, but still many symptoms same diagnosis. Appreciate all of the research you’re putting into it. Thanks for replying. Don’t mean to be negative, just thinking all avenues should be pursued. I really don’t understand functional pain, don’t have it luckily but don’t know what kind of pain would fit in.
Thanks.
Functional Neurological Disorder is the new name for Conversion Disorder!
Yes. The name was changed to reflect changes in understanding of this condition. We now understand it to be more than "conversion" of psychological symptoms. The word functional is used to describe a condition which is a product of disruptions in functional connectivity.
@@EffieBNeuropsycology the problem with the title however is how easily it is used. I fear some patients will be inappropriately diagnosed where something more serious is missed and similarly disorders of the mind will also go untreated in favour of labelling with FND which reinforces a problem rather than reinforcing full recovery is possible. Whatever the diagnosis enabling care should be available to all and that I think we are both agreed on. 👍
@lindasmith8771 previously this did happen. However there are positive signs used for diagnosis and diagnosis should always be a "rule in" rather than an exclusionary process. Recent studies show that misdiagnosis is actually rather rare in FND.
T H I C C
No subtitles biggest issue with deaf community in lost!
Hi there. There's no captions on talk itself but these can be turned on by clicking the closed captions button (square button with 'CC') on the screen for auto generated captions. I've been through the autogenersted and it mostly seems accurate aside from the odd instance where it's not generated FND correctly. Hope this helps.
@@EffieBNeuropsycology it showed as not available
There is a transcript you can read
@@tinacampbell327 doesn’t show it and would be good to spread awareness that we need bsl materials
Theres an amazing FND discord server if anyone wants to join
Would love to know more.
Most of the comments about this video are: "I wish FND was understood better." Well, the solution is to spell "FND OUT! FND = Functional Neurological Disorder = Duh.
If only it was that simple. Even when FND is spelled out unfortunately people have just never heard of it within medical settings or the general community. Those diagnosed have to have scripts to explain their diagnosis. There's also a great deal of stigma still attached to the condition and a lack of research to understand what might be going on for those diagnosed
The child was happy with a legitimate reason not to be at school and so after flu and Glandular fever she got another legitimate reason not to be at school and her paralysis required hospital admission and eventually a diagnosis of FND.
We are learning new things but does that mean medicine should now rule out hysteria? To ignore the possibility of mental illl health ignores the possibility of treating patients in order to get them to the point of full recovery.
It would be interesting to scan the brains of patients with FND who sit with Neurology and also those with Conversion, Somatoform or Dissociative Disorders who sit with Psychiatry. Which group of patients have the best recovery and full return to health?
FND leads to the belief there is a physical cause and legitimate reason to be ill. The genuine disorders of the mind cause physical symptoms for which there is no physical cause and thus symptoms need not exist.
How do we care and treat appropriately if we do not consider the role of the mind in how our body works. Did medical science move on so greatly it forgot to reassure the patient that "all looks well from a tests point of view and we can expect to see a full recovery". Sometimes the reassurance of knowing nothing is wrong is in the first instance is far better than a diagnosis of FND.
The child was not happy to be trapped in her own body having lost the ability to move and talk. It was not a conscious decision to become ill and I did not suffer from psychological issues.
Brain scans do show us that there are differences in functioning. Distinct patterns of dysfunction which show that in FND there is an issue with neural networks and the way the brain communicates communicates.
Of course there is a role of psychology and the mind - when is there not? But FND goes beyond this. It's not "playing a sick role" it's legitimate and results in extreme suffering
@@EffieBNeuropsycology FND is is a label which is used by many medics to satisfy the need of a patient to be diagnosed. Treatment is poor and leads in most cases to the continuation of disability/long term disability. Those with psychogenic symptoms need psychology services not a label of FND and newspaper articles suggesting it is a rare Neurological Disorder.
@@lindasmith8771 you're right that treatment is very poor and that's why multidisciplinary team work is needed to improve care provision. My research shows that this goes beyond psychological issues. Whilst I appreciate their importance a holistic understanding which includes neurology amongst other disciplines is needed
@@EffieBNeuropsycology I understand the confused care from most in neurology who tell the patient one thing but mean something else. It is not appropriate to make patients believe brains are wired incorrectly or messages don't go from brain to muscles we'll
enough when scans do not show any organic disease and tests such as sseps or veps are normal. FND is used as a panacea to satisfy the needs of patients who deserve a diagnosis but I don't believe FND is the way forward when it encourages symptoms to exist. Formerly FND had other names which were considered mental health illnesses and physical symptoms were discouraged when no organic problem was identified. In the present care is lacking for both physical illness and mental illness because all patients are being labelled with the same thing - medics use FND as an easy option because they believe it does not demean the patient in the way psychiatric diagnoses can do when passed on by poor Clinicians. All symptoms are real to the patient but most patients are missing out on recovery and rehabilitation from lack of physio, ot and psychological care. Patients who do not appear to have psychological problems are most likely "happy" with their FND diagnosis and symptoms and are therefore not asking for psychiatry or psychology to help them cope with what is often a disability which is life altering.
@@lindasmith8771 brain scans do not show structural damage but they do show functional dysfunctions in FND. Even if this were a psychological condition (which it is not) does that really make those with FND any less deserving of support? Those with FND are distressed and stigmatised against frequently as you are showing too. This talk was to raise awareness and to start a conversation but certainly not over the legitimacy of the condition. Whilst it seems your opinion will not be shifted it does seem that your views detract away from the bigger issue here
Those with FND need support.
Demonic possession 💯 i am recitkng ruqya on myself.. please all you do too.. Quran is very powerful