I live in Cornwall in the UK and have tried to contact my local MP about my challenges and experiences living with FND as there are no FND services in Cornwall and professional just say i'm too "complex" and they cant do anything. I am still being passed from pillar to post after 10 years. I have been doing my best to stand up for myself but can't deny how truly challenging it is when I sometimes cannot physically speak or function and have experienced so much mistreatment and neglect when in crisis and flare up over the years, because of a lack of knowledge or understanding across the health and social care sectors. I would love to get involved in helping to raise awareness too!
I have been supporting my son with FND over the past seven years. He has had so many healthcare professionals telling him that he is making it up or initially 'shake it off', it has been very distressing. My heart goes out to everyone with FND. It is a horrible condition. I am so grateful that FND Hope is now on the map and trust that help will be available for everyone in the community (via a specialist community health nurse - a visiting one! - that would be a miracle!). But there is Hope now xx
I live in London I have FND and I have to wait 4 years to see a neurologist team, now waiting almost a year for another appointment to attend a 5 session. This is sad , I hope they take it seriously
He's an idiot. Old school doctors don't. I filmed my jerks and palatal myoclonus. I'd love to see him explain that away !!! Find a Dr that does . Mine is at Queen's in Nottingham. He is an expert in the illness . Its now on the syllabus for new neurologists . My clips are being shown in lectures . Some don't believe. I'm in bet now as bad week. Horrendous spasms ,but meds help. Good luck x
My name is Jean-Louis Benard. I would like to find out if there are any support group in the area of Victoria British Columbia. After 4 years mostly in bed I have regained I would say 80% mobility as well as driving ability. Thanks to a neurologist who recognized my symptoms as FNDand not paraneo plastic cerabelar degeneration as the symptoms are very similar. I still get flare ups from time to time but the tricks I learned are still effective to slow or stop the flare up. I would live to use my experience to help others who suffer the same fate.
I live in Cornwall in the UK and have tried to contact my local MP about my challenges and experiences living with FND as there are no FND services in Cornwall and professional just say i'm too "complex" and they cant do anything. I am still being passed from pillar to post after 10 years. I have been doing my best to stand up for myself but can't deny how truly challenging it is when I sometimes cannot physically speak or function and have experienced so much mistreatment and neglect when in crisis and flare up over the years, because of a lack of knowledge or understanding across the health and social care sectors. I would love to get involved in helping to raise awareness too!
Thank you! Our champions leading the charge!
Finally !!!!!
An important cause - I hope the efforts bring more understanding and insight and awareness around the the globe
Hoping this will start to change and help all with this illness.❤️xxx
Thanks for all the work you do.
I live in Sheffield UK and I was diagnosed with FND November
After years of being ignored by doctors
Really hope they find a treatment
I have been supporting my son with FND over the past seven years. He has had so many healthcare professionals telling him that he is making it up or initially 'shake it off', it has been very distressing. My heart goes out to everyone with FND. It is a horrible condition. I am so grateful that FND Hope is now on the map and trust that help will be available for everyone in the community (via a specialist community health nurse - a visiting one! - that would be a miracle!). But there is Hope now xx
👍🇬🇧
I live in London I have FND and I have to wait 4 years to see a neurologist team, now waiting almost a year for another appointment to attend a 5 session. This is sad , I hope they take it seriously
Yes, at last but my GP does not believe FND though.
He's an idiot. Old school doctors don't. I filmed my jerks and palatal myoclonus. I'd love to see him explain that away !!! Find a Dr that does . Mine is at Queen's in Nottingham. He is an expert in the illness . Its now on the syllabus for new neurologists . My clips are being shown in lectures . Some don't believe. I'm in bet now as bad week. Horrendous spasms ,but meds help. Good luck x
My name is Jean-Louis Benard. I would like to find out if there are any support group in the area of Victoria British Columbia. After 4 years mostly in bed I have regained I would say 80% mobility as well as driving ability. Thanks to a neurologist who recognized my symptoms as FNDand not paraneo plastic cerabelar degeneration as the symptoms are very similar. I still get flare ups from time to time but the tricks I learned are still effective to slow or stop the flare up. I would live to use my experience to help others who suffer the same fate.
We believe there was an in-person group prior to COVID. Support groups are currently online as advertised on our social media platforms.
I would like to know what she eats?