Hope: FND Stories
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- Опубликовано: 9 июл 2024
- Embark on a journey across the United States through firsthand patient narratives, diving deep into the intricacies and hurdles of Functional Neurological Disorder. Directed and edited by the filmmaker, Justen Noll and produced by Faye Hedera, this film is a testament to the resilience and courage of those living with FND.
FND Hope would like to extend our heartfelt thanks to nearly 130 individuals from around the world who participated in bringing this project to life.
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
Thank you for all your heartfelt work in producing this. These stories need to be heard-- especially by the medical community.
These stories need to be told to educate people and some neurologists
Deberían ver estás historias todos los neurólogos del mundo y psiquiatras tambien
Thank you for sharing your stories. I have FND to and I can first hand understand everything each person said. It feels good to know I’m not alone. Your right FND is hard everyday. I will continue to share my story to anyone who will listen with hope to educate more people and medical providers. ❤
Thank you for everyone involved for taking the time to create this documentary. I'm going on 14 years living with FND.
As a fellow FND sufferer I would like to thank you for sharing this video and hope everyone who shared their story are OK xxx
This is very informative for those who aren't familiar yet, still very heartfelt. Having FND I can very much relate and am emotional. Sharing to all in my circle.
Much love
Just out of a private consultation with a neurologist in Sheffield thornberry hospital. Was told that I need to think myself better or I will
Stop myself healing from
FND. Advised to follow up neuropsychology even though I explained I am on a wait list via nhs neurology and it stands at 2 years at the mo! He told me to lie and not tell the mental health team I should contact that I am on that wait list. He told me that chasing a diagnosis at private consultations - I have ME and FND diagnosed but I have white matter in my brain scans and my dad dies of Lewy bodies dementia at 67.. so I chased up some advice rather that waiting - I saved for months to be told I need to think myself better by a professor in neurology. This is why we need better representation and so much more research into this disorder. The people at the top still think we can think ourselves better . I feel sick to my stomach at the thought to of what is to come. They used to tell people with MS that they were malingering. Same with aids patients. I wonder what the future brings for FND patients worldwide. Sending love to all of us diagnosed with this x
I can relate to you.. I have fairly prominent small vessel ischaemic changes in both cerebral hemispheres and was told by neurologist that for my age that is a lot, however they don't think that is contributing to my gait, cognitive, speech issues as it is more likely FND and spine degenerative disease. My grandmother had early onset dementia and Alzhimers in mid 50's. This was a second opinion 1st neurologist said FND, Spine degenerative disease and multiple scattered T2 Hyperintensity in both cerebral hemispheres and both FND and vascular changes could be contributing to gait, memory, speech etc issues. Tbh they don't know and everytime you go and see a new neurologist they say something different/contradicting what they say or even their colleagues. Everyone keeps saying don't stress then things will get better. Honestly kinda fed up hearing that. I am in constant pain, tingling in hands n feet, constant pain in calves, can't walk for long, my walking is so difficult and different to how I use to work (and I so miss my walk) no one gets it
@@moebymakeup I hear you.. this is so scarily familiar. I don’t understand how a neurologist can think that telling a person with multiple systemic symptoms to relax is in any way helpful? I mean these people are educated to the max, right? Surely they know that they are seeing electrical signalling issues that aren’t going to magically disapear if we just sing a happy tune and look at the flowers? In the uk there are no imaging facilities that allow the signalling issues in FND to be clearly seen. It’s a ‘nope. No lesions so no problem’ blanket response I seem to see across the board here. Which is v worrying. Esp with history.. I’m v sorry you’re in this too x
I was just recently diagnosed with FND on May 9th and I would like some more advice on managing pain and random tremors
We found that by pushing on the base of my head (neck)where the parasympathetic nerve runs the seizure stops. Unfortunately if the seizure isn’t “finished” when the pressure is released the seizure continues. Maybe someone reading this will find this helpful.
I had an FND diagnosis last May after 6 years of ME diagnosis and a round of tests for MS. The neurologists knew I had a lot of trauma in my past and stress in my present and rather than test me for other things they went straight for the FND diagnosis. I have light spots on my brain and issues with the docs on my spine, movement and speech and cognition and balder bowel sensory and sensations etc. They refuse to acknowledge the physiological changes in my body and I am awaiting neuro psychotherapy and FND physio awaiting. Currently the wait lists are two years min. Mean time I have to sit with the FND diagnosis which is a shock enough as it is, let alone watching my symptoms being passed off as ps colorectal by nhs Sheffield hospital neurologists. In the uk FND is v much still a v misunderstood diagnosis that in my experience is actually dangerous to have on medical notes when it comes to accessing treatment and support.
That’s should say psychological - even though colorectal issues are now involved 👍🏻
I'm so sorry you're going through this. ME is awful enough. And yes, the diagnosis is problematic in the US as well.
* sorry I lost track- said that chasing a diagnosis at private consultations wasn’t the right way and to look up cbt and mental health support
Anyone else have experience in uk?
Is my son the only one to havr zero balance as his only symptom?
Persistent Postural-Perceptual Dizziness (PPPD) is one manifestation of FND.
It's a THEORY not a definitive thing
A theory that is far less harmful than the "she's faking it for attention" theory has been.