Three Families and FND

Three families talk about their experiences of understanding and having treatment for Functional Neurological Disorder (FND). We are so grateful to Lana, Oscar and Rosie and their families for sharing their experiences of treatment at Great Ormond Street Hospital, London and making these films during the 2020 lockdown in the Covid-19 pandemic.
Currently (as of March 2022), the Great Ormond Street Hospital functional symptom service is reconfiguring, and is not accepting any referrals. We all hope though that the film can help other young people and their families dealing with the same problems.
Director - Juliet Singer
Editor - Russ Chapman
Production Team - Maria Hadji-Michael, Eve McAllister, Nimmi Parikh, Isobel Heyman. Psychological Medicine Team, Great Ormond Street Hospital, London
Jon Stone is grateful to the families in the video, Isobel Heyman and the team from Great Ormond St for allowing him to publish this film on his KZbin channel and website Neurosymptoms FND Guide at neurosymptoms.org

[@user-fy4uc7nu5d]

What a wonderful mini-documentary on this a largely unknown and unpredictable disease. My daughter Grace, 16, has been to every "ologist" in the book. Like everyone else here, most doctors did not know how to deal with it; but we found the best knowledge falls through the cracks of disciplines so we organised school, neurologist and psychologist to group chat which helped everyone understand. As the Westmead Children's Hospital functional seizures unit booked out for 9 months; we sent the health professionals guideline to a private hospital who have been wonderful in supporting Grace (she is currently there now). It's so wonderful to hear some positive stories too! So very grateful to you Jon for sharing this and also showing that these young people - despite their affliction - are so resilient, innovative and resourceful. Might also point out that hypnotherapy was enormously helpful for us too. Jerry Knight Newcastle (seizures went down last week from 10 to 20 a day, one 21 minutes, down to three or four a day mostly a minute or two.

[@biviendoconfnd]

Thank you, for sharing I just recently got diagnosed with FND. 🙂

[@EmzKitten]

Just got diagnosed with FND today, years and years of things I didn’t know where related and now I have an answer. I’m happy but also feel weird about it but I am just glad I know what it is.

[@EmzKitten]

@@mais00 thank you, it has gotten harder but I’m trying my best to get the help I need to try and make my symptoms better. It’s hard but knowing there are people going through the same thing does help 😊 hope you’re okay too and hope you have a nice Christmas if you celebrate it

[@tomsale5142]

​@@EmzKittendo you have hypomobility decades symptoms here to since a fall 27 years ago pain worst symptom diagnosed now autism ADHD heds are you hypermobile

[@rebeccajphall]

This is great. thanks . I am a GP involved with long covid and CFS in Somerset. And I was at school with Juliet Singer and then at Edinburgh doing medicine graduating in 1994. Well done for raising awareness.

[@samantharichards7797]

Great to share this x wishing all 3 families the very best of luck in the future x

[@biviendoconfnd]

I have had FND for 8 years but just 3 years ago I got diagnosed and I'm still waiting for help on how to manage or get any physical therapy. please respond I live in Washington State in The USA. Thank you

[@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?

[@mais00]

I’ve got fnd and I’ve not had that, I get tremors and sometimes leg paralysis, tell him not to worry tho, it’s just his subconscious mind think about it while he sleeps, also good luck to him, I hope he recovers

[@mais00]

I was in the zoom meeting with them cause I also have fnd so I got to meet them but I didn’t make a video cause I’ve got anxiety and I just couldn’t cause I was too nervous

[@calluna5030]

Some of us are shy so will naturally find it much harder to be at the centre of a video. I hope you are making good progress too.

[@Karma-fp7ho]

Lana sounds a bit like Maddie deGaray.

[@bxstar5276]

12 years old? I didn’t have so much self awareness at 30

[@bxstar5276]

@@mais00 it doesn’t disappear but it can become barely noticeable when managed? Although management looks like living in a bubble

[@bxstar5276]

@@mais00 hey, I’m asking because I have it bad. I had over 2000 seizure fits in 5 months

[@bxstar5276]

@@mais00 yeah I know I was letting you know that I feel you and it’s really tough. I’m just looking for some hope right now.

[@tomsale5142]

Asperger's gives us insight but late diagnosed for me 43

[@bxstar5276]

@@tomsale5142 I’m diagnosed with autism I had insight not self awareness.

[@cybco]

this is only the beginning of what's coming towards the advanced nation states. Lots of mental issues coming with kids.

[@tomsale5142]

It is linked with autism yes stress is the trigger

[@rogersullivan6123]

💪 ρяσмσѕм