Functional Neurological Disorder | FND Hope |

Who Are We?
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 Patients to Better Health

[@caterinaint6963]

FND a awareness is vital. Posts like these are so important. Thank you for all that you do for FND - awareness, treatment & research. I finally received an FND diagnosis last year after years of battling with the medical system and my own self doubt . Several times I would give up searching for answers, thinking I was maybe going crazy, but persistence at all costs (a trait which probably contributed to the FND in the first place) kept me going. Like almost everything else, it is “in my head”, just not the way I thought it was. I am one of the fortunate ones, I see a wonderful clinician in Prof Wilson’s rooms. Apart from the direct benefits of the therapy, having a medical professional accept and understand FND, and the very real, sometimes bizarre manifestations , is in my opinion, the vital first step in the success of any therapy for FND (especially if you have been on the FND medical merry go round!).

[@user-hk3is1xj3z]

FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS

[@Amy-tq6wm]

FND awareness is crucial in Australia we are so behind compared to the UK. My diagnosis in 2019 of CD was so distressful as no one could tell me what was wrong with me that I looked it up on line and found FND Australia who explained it. I have found it continues to be extremely difficult to find the best treatment or specialists who even want to treat FND. An advertising campaign on TV would be fantastic! I recently found my own T-shirt that says “FND warrior” as I decided to start educating people myself as it can only be helpful 😊 SA is really behind some other states even unfortunately.

[@stevenford4719]

I have FND i live in Australia & i had never heard of it until i was told i have it . Everyone who has it will tell you that they would never wish it on anyone els it wouldn’t matter how much you hated them . That’s just how cruel it is to those who have it . i see many FND sights & organisations on the internet but i never see the one thing that all of us who have it need the most a number to call or a button to push to say i have FND & i need help or just someone to talk to about it ….

[@jadebass-qc6of]

Thank you sooo much for this I have FND. And am due a diagnosis later this yr or early ‘24 I never heard of it before until a neurologist suggested that I don’t have fibromyalgia that it maybe FND. He was the only doctor that I’ve seen that actually listened to me properly I wish I could afford private care so I could have him with me. I cried with relief after my talk with him as I was always palmed off After so many scans and tens of blood tests There needs to be more awareness of this invisible condition Although it’s not invisible to me and my partner who’s had to bath me cook for me bring me my food Amd essentials I couldn’t cope without him Amd my dad I feel bad for people that have no help Amd my dad and boyfriend can only help so much as they work full time and very long hours We just need professionals to know it’s real even though they can’t see it It’s a real thing

[@user-re4nq1ej8j]

Best interview I have listened to in 28 years of living with FND. Great questions Dee and caring, very relevant and switched on conversations from the panel.

[@keshavyoganathan832]

Hope you are ok. And just wanted to ask, out of curiosity, if you felt like sharing, all good if not...has the severity of your FND changed over 28 years? Or different symptoms over time? Any particular symptoms that have persisted over time? I first suffered FND 21 years ago. Thank you

[@keshavyoganathan832]

Thank you for this discussion, especially with experts who are not only well informed, experienced etc but also compassionate to those who suffer as well as further research and education. I first suffered FND, conversion disorder when I was 16 (21 years ago). It was most severe over the following 8 year period, with periods of time getting 'better' then 'relapsing' again. Mainly constant jerking and tremors through my head and left limbs. Didn't have the awareness, info or treatment back then like it seems now, and it is inspiring that hopefully those who suffer FND can access better treatment and help. As well as better understanding-treatment of causes, mental health, trauma etc (which was my case). Thank you again and solidarity with anyone suffering FND

[@melissamcgrath68]

I see Dr Alexander Lehn in Brisbane. I was finally diagnosed in September 2020 after multiple hospital stays over 4 years and many misdiagnoses. We worked out that my symptoms actually started when I was in my early teens. I now have a realborn doll I hold throughout the day that helps calm me when I have sensory overload and I don’t have as many tics, spasms and functional seizures.

[@HELENFERGUSON-ee5lq]

He is the best. I see him too

[@carolcaldwell]

Thank you so much for sharing this discussion on FND!

[@jadebass-qc6of]

I had a convulsion at 6 weeks old and I think my FND. Is all linked to that

[@kat_84]

This is so encouraging.

[@kengel100]

My GP has never heard of this 😅 Thank you so much for sharing 💜

[@grinch4567]

Thank you for sharing this 🙂 I have MS and have been told I have Functional Overlay too - I guess that’s the same as FND, is it? On the subject of Neuroplasticity, I have read Norman Doidge’s book. He talks about Brain Mapping Therapy: is that something you employ, or would it be relevant?

[@rohinihyde4766]

Lost my ability to stay balanced while walking a few weeks after my 1st AZ jab - that was 18months ago. After numerous tests to rule out many neurological diseases I have been diagnosed with FND not because of the jab but due to anxiety. I have never been treated for anxiety so I do hope the doctors are giving me the right reason.

[@stellaancimer8505]

what syptoms do you have, can you get disability?

[@rohinihyde4766]

​​@@stellaancimer8505 my right leg does not move anywhere near normal - feels semi paralysed and affects my balance very badly..

[@kerrypanopoulos1989]

I’m so sorry this happened to you after your first jab. I hope your managing well. I to have been diagnosed with FND last year in November. God bless you🙏

[@stellaancimer8505]

awareness is crutial..thank you for that video, does Fmri can show something on the scan