Hailey's FND Journey | Functional Neurological Disorder | FND Hope

Hailey, Youth Ambassador for FND Hope, shares her diagnosis of FND and her path to treatment. Her mom, Karen, explains the difficulty of watching her child struggle through the difficult diagnosis. Hailey and Karen found a community of support and encouragement through FND Hope International, and now Hailey uses her experience to help other youth and young adults with FND.
FND Hope Mission
Our mission is to promote awareness, support affected individuals, and advance research for the prevention, treatment and recovery of FND.
FND Hope Vision
We envision a world where FND patients can expect to be treated with dignity, care and respect, regardless of the cause of their symptoms.
FND Hope Motto
We Empower Patient to Better Health

[@lizzie88972]

Bless you. You've been through a lot. Thank you for your story. I've had symptoms for 10 years, but only received a diagnosis of FND last year. It started in my left hand as dystonia and has gradually moved to all my left side. I now cannot walk far, I mobilise using the wall, furniture or my husband at home, I'm house bound and I'm now going to need a wheelchair. I've been to neurophysio and do my exercises regularly, I practice mindfulness, prayer, positive thinking and gratitude. I'm still affected and my symptoms are not going away. FND affects everyone differently, not everyone will recover regardless of what they do. I'm absolutely fed up with people being judgemental and making insensitive statements like "it's completely cureable" or "you can remap your brain". This is not the case! It's an insult when people say that. I was in my 40s when symptoms began, so now in my 50s with worsening dystonia, mobility and walking. I'm just trying to make the best of my life! As everyone else with it is too.

[@natea2006]

We are living this right now. We understand what her mom is saying.

[@sunnystar505]

I’ve had FND for the past four years..I refuse to believe that you’re symptom free….I’m still struggling

[@Danny77Dee]

Thank you Hailey for bringing Hope

[@vallarfaxgaming]

I've been living with FND for four or five years, next year will be five at a minimum and i was diagnosed February 2022 I can absolutely assure people that not everyone recovers or even improves which is more likely the longer you go untreated before and after diagnosis, and unfortunately due to the UK having next to no support or proper treatments for FND i and many others have been left to gradually get worse over time

[@DorisBates1]

Hi Hailey, we are in Australia, my grand daughter has recently been diagnosed with FND, your segment has given me so much hope for my granddaughters future. We had a beautiful 12 year old girl within a month she was unable to walk, had seizures and suffered so much pain, she had her appendix removed unnecessarily all due to doctors being unable to give her a proper diagnosis. She is now receiving physiotherapist treatment and seeing a psychologist.

[@sonjaplace5198]

Hi Hailey. It is so good to hear your story of hope . We are in South Africa and my 15 year old grandchild has been diagnosed with FND 3 months ago. She has been struggled for years. Dr's don't understand FND here and just don't know how to treat her. My heart just breaks for Jordan, who like you, has multiple FND symptoms and about 60 to 80 non epileptic seizures a day. . Every day is a struggle for her. We would love to connect with you if you are open to that. Many thanks.

[@bernice491978]

Thank you for sharing your story. My FND symptoms started out of nowhere one in summer of 2019. I couldn't walk at times, unable to talk, and my mom and husband had to help me get dressed. I went to neurologist after neurologist before finally finding someone who was able to diagnose me. I was diagnosed in summer or 2021. My symptoms come and go, and not as problematic as when they first started. Treatment for FND is not where everyone can receive it. I am unable to afford the treatment. We need more awareness out, and treatment for everyone not just those who can afford it. I live with it everyday and have learned to adapt as has my family. Prayers for all who are afflicted with FND.

[@thatmomandi2240]

Hello hailey. My 12 year old daughter was just diagnosed with FND. Your story is heartbreaking. My daughters symptoms aren’t as severe as yours. I hope you’re doing well now🤍

[@karentjebben5055]

Hi Hailey, I'm so happy that you were able to get to symptom free. What a wonderful example of hope you are. My daughter (15) has FND. It started in summer of 2019. She went to Mayo Clinic in Rochester, MN. To learn how to walk again. How did you "open your window" so you don't have pain anymore? Was it talk therapy, physical therapy...? I'm looking for something specific I can do for my daughter. She has chronic pain.

[@mikeycjdean707]

Thank you for sharing. My FND diagnosis was made in 2021. Some days are good, most are bad. I’ve learned to manage my activities.

[@DrEdelEducationPsychology]

You are amazing Hailey, so inspirational! Thank you for being such an awesome ambassador and giving hope to so many!

[@joyinlightcreations8851]

I'm at the end of my rope right now with my own 😢😢😢I understand so much. There has to be Hope somehow. I'm so tired of having seizures. So tired of no quality of life. 😢😢😢

[@sebastiancampos4197]

Hello, guys! One of my closest friends was recently diagnosed with FND. Half of his body is paralyzed, he's receiving treatment and has made some progress since then, so I'm not too worried about him. But the interesting thing about his case is that he had several dreams prior to the onset of his symptoms in which half of his body was a statue. Has anyone here ever gone through a similar experience?

[@auntsarah16]

I just was diagnosed with FND in August 2023.

[@jaredprocopio2840]

This is so inspiring!! It’s so comforting to know this can be beat ♥️ My 11 year old was diagnosed with FND last week 😢 its been the scariest and most heartbreaking thing ever! Luckily, she was diagnosed within a month of showing symptoms, after 5 ER visits. We’re praying that because we caught it so quickly, that there’s hope she can overcome these episodes. They’ve gotten worse over the weekend :( with the tremors, seizures, passing out, not knowing who she is, and just general involuntary body jerking. But after a few minutes, she’s fine! She starts PT tomorrow and CBT next week. Any advice you can give for her??

[@SiothaVest]

Hailey - help! How can my daughter & I get through this

[@toniawebb5533]

My 24 yo daughter was recently dx with FND. We are finding there are not many doctors with the knowledge to help. We just keep being told to treat the underlying stress and that will fix her. She has severe tremors, diatonic, abnormal gait rapid eye movements and slurred or stuttering speech. Our lives have been changed dramatically.

[@kevindonley3632]

I literally don't have words right now. Almost 39 yrs until I finally got some answers n it's not just unspeakable but unthinkable what I've been through. And I refuse do anything to just say it like it really is for only the best motives possible for me n all those concerned. It's not good at all but it is just is what it is n I'll live n breath to just help anyone in anyway possible because there has never been anyone and in anyway to Ever be there for me in over 39 yrs not even once. Really! Until Maybe Now.🤞💯💯💯💯💯💯💯

[@abeautifulmindispoetrydefi5323]

Dear FND brothers and sisters. My story goes back over 18 months ago, when first diagnosed with Meningitis after being rushed into Barnet Hospital and then being given 2 lumber punctures and treatment to solve the initial diagnosis, which actually caused an A.K.I. with quiet voices suggesting that perhaps I should be moved on to dialysis or have a bag was the very last thing I wanted to hear. There is nothing more frightening or even disorientating than to hear that going on in the background. I was in and out of consciousness, and sleep seemed to be the last thing that one could get in a hospital ward. I was surrounded by some of the best care staff in the N.H.S. who I now have the deepest admiration for. I am not your run of the mill average person, which you will soon discover. However when your cast into what felt like a very life threatening situation, it is a real leveler and for me it was touch and go to the point I said to God I'm ready if tonight is the night, then just take me home' Funnily enough there have not been too many times that I've ever said that to God, and this couldn't be more real at the time it was the 28th 29th September and I had made my piece with the world. I was 61 in age but more like a 40 year old in lifestyle and fashion. By then I had lived life to the full, and had partied hard, and had no real reason to be upset that my time had come. I said to God, if you want me to stay, then please have a very good reason, but make sure you let me know what it is. Well 18 months later I'm still here, by grace alone. When I was told that I had FND, the neurologist said if I had seem him 10 years earlier I would have been simply discharged with no treatment. So in one sense, I can thank God everyday. So what is it I want to share with you all. Well, the first thing is never give up "Hope" and secondly, if you can roll up your sleeves, and get involved with helping the professionals with contributing your story, then its possible that with your data, however small will help them to get a broader picture of what they are looking at in order to determine the best treatment for each individual. I am an advocate that "One size does not fill all" and if I have to crusade to get that message across to the B.M.A. then so be it. My background is anything far from normal, and many would say that I've been in the right place at the right time, which not many of us can normally say. I am not overly happy that even 10 years on with this new condition, that it would appear that very little progress has been made, but that's not to say that strides cannot be made now. I have a scientific disposition that allows me to be able to convey very accurately my own state of mind and how my body is reacting in almost real time. Not many people are that in tune with themselves. A disciplined mind and meditation has been my main companions throughout my life's journey. I paint, I write poetry and I probably have one of the deepest minds on this planet currently. My goal will be to champion FND, and to establish a far greater understanding of the wide range of symptoms and conditions it can sadly present. I have been a professional carer, in order to get a far broader picture of what really is going on in our society. What I would like to get out of this, is two fold, one is the very best possible care, from this field, while I serve to be a guinea pig so to speak, and to be paid for the work of undertaking the role of documenting and reporting all the aspects that I have already encountered and the day to day ones, that surface, and report on the progressive improvements that one can monitor and catalogue as well. With all this information, it will provide fellow suffers, to contribute in a positive way to confirm and acknowledge the similarities and the subtle variations that could be presenting itself in others. Which would strengthen our case that just as anomalies occur in science so does it occur in medical conditions that we discover only as a matter of time. To this goal, I would be more than happy with the professionals contacting me by a response to my comment here, so that we can begin moving forward in what may feel as delivering the undeliverable. My ability is to think outside the box, and not to be restricted to just living inside the box, if you get my drift.

[@theangrytiredzebra]

When only 20% of us get better, even lower when the intense and unrelenting pain is present... When relapse can happen at anytime... It sure doesn't feel like there is hope.

[@CleverCAT]

🙏

[@rachelslater7670]

Hello. I've been diagnosed in May of 21. These symptoms are so terribly debilitating. I'm in an area that has no resources. They didn't really even know what it was. I've been searching for any form of a support group or simply just somebody to talk to, who understands. I'm not on Facebook. Do you know of any other options?

[@lindamcculloch8941]

Hi, how long did it take for your symptoms to get noticeably better 2 years Iv got progressively worse and came from nowhere. I do hope you are still in recovery x

[@pamelayates8243]

Hi ,I'm pam and was diagnosed with FND 3yrs ago after seeing a consultant. it took a long-time before i was diagnosed about 18 month I'd never heard of FND i cant walk unaded I walk with crutches and I use a mobility scooter to do my shopping It's made me very depressed Iv had therapy for that but it's not worked I'm in pain in my back legs, arms and suffer chronic headaches it's driving me mad they told me at the hospital there's no cure, they won't give me physio they said it won't Work as there's nothing wrong with my body it's the brain Can sombody please help with sone advise I take 4 different kinds of medication I take twice a day but to me the meds are doing nothing Thankyou Hope sombody can help

[@abeautifulmindispoetrydefi5323]

Hi Pam, my name is Denis, and I don't want you to give up hope' I've just written my story on here, albeit it in typical Sigma Male style, and with next to no expectations of being taken seriously as there are far too many skeptics on the internet, and it's not a wonder with the amount of fake news that no one can tell the difference anymore. I have only recently been diagnosed with FND and it has been an uphill battle from day one. However my life does seem to be improving but at a very, very slow rate. As for my recovery they have been in extremely small steps and whilst I can look back and see the improvement, I am also acutely aware of the fragileness of my condition and what knocks we down as well. So with sharing some of the insights hopefully we can all help each other to take on a far more positive attitude and enjoy our lives even if only fractionally better than we did yesterday, if that makes sense.

[@hadizatadez2151]

After all the years of having Menieres diseases and constant ear ringing , it is nice to sit in a quiet restaurant without anything bothering me. Even the fullness in the bad ear is hardly noticeable. And the constant ear ringing is gone.Took 4weeks ?thanks Dr Liam Ogbebor centre on KZbin for the tinnitus program and herbal ear drop treatment and I hope it stops for everyone else sooner.

[@mmay6621]

It’s a shame she’s not answering or commenting.

[@DrEdelEducationPsychology]

I wonder whether she is even aware that this particular link is up. I hope that people are able to contact the foundation and get a reply.

[@chelseaf.3352]

She isnt the one that produced the video, FND Hope is the one that made the video. So she can't be answering people's questions because she doesn't know they're there.

[@StoicSuperstars]

If you have this disorder, if you’re looking to pull the root cause vs. treating symptoms with drugs, start being an investigator of everything that goes into your body. The nutrition facts on the labels of foods, why would you not investigate the bean and seed oils, sugars, and complex carbohydrates

[@PurpleMomgoose]

Total raised $0 :/

[@CookEamonster95]

You guys are misleading poor, helpless patients with FND…please skip the PT and and specialized therapy only…patients desperately need TMS and you guys are not talking about this enough…it’s all about money and business for you guys…it’s a shame, I’m so sorry for all of you suffering in America’s helpless FND “healthcare”

[@peacefulmental]

What's TMS?? I have FND just diagnosed