FND Hope UK | Inaugural Parliament Event 8th February 2023 | FND

FND Hope UK were proud to represent our FND Community on the issues our community experience during our inaugural parliament event.
Professor Mark Edwards summed up the event by saying: 'The FND event in Parliament was an amazing opportunity to talk to MPs about FND and to see them go from not having any significant knowledge or understanding of the condition to realising how common, disabling and important it is. Then, and even more importantly, to see their disbelief and even anger that such a common condition has no established pathway for accessing expert assessment and treatment in the NHS despite the obvious benefits this would have for people with FND and their loved ones. It felt like a real step forward to address the inequity of treatment for people with FND and to finally give a public voice to all those affected by the condition. For me the feeling I walked away with was hope, that working together we have a chance to really change the situation for people with FND now and into the future'.
Thank you to all the MPs who attended our event and signed out declaration to support our community.
#FND #FNDAware #functionalneurologicaldisorder #MyMPisFNDAware #LetsTalkFND #fndawareness #FNDisreal

[@millymay0025]

Thank you! Our champions leading the charge!

[@christhorpec]

An important cause - I hope the efforts bring more understanding and insight and awareness around the the globe

[@vickyg4224]

Thanks for all the work you do.

[@jackyeastwood9294]

Finally !!!!!

[@Caitanya-LilaHaslam]

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!

[@nicolapowney9262]

Hoping this will start to change and help all with this illness.❤️xxx

[@emmabingham6765]

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

[@Juliet847]

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

[@cherylbetts7379]

👍🇬🇧

[@avawright4080]

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

[@hazelmacmillan7588]

Yes, at last but my GP does not believe FND though.

[@jackyeastwood9294]

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

[@louisbenard-nr9ey]

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.

[@FNDHope]

We believe there was an in-person group prior to COVID. Support groups are currently online as advertised on our social media platforms.

[@stellaancimer8505]

I would like to know what she eats?