Girlguiding has been a lifeline for my daughter with FND

Functional neurological disorder (FND) is a medical condition affecting how the brain send or receives signals to and from the body.

We heard from Gemma, parent and volunteer, on what it’s like for her daughter to live with FND, and how Girlguiding has been a source of support during the challenging times.

‘Functional neurological disorder (known as FND) is described as the most common neurological condition you’ve never heard about. It’s believed to be one of the most common neurological conditions diagnosed, after migraines. There’s no medication you can take to stop it, just relieve the symptoms, to some extent.  

How I explain what FND is to those who don’t know

I describe FND as follows: envision the scenario where you receive an attachment in an email. You click to open it. It is a Word document, but it opens in Excel and it is gibberish. There is nothing wrong with your computer, nothing wrong with the hardware, but the software is misinterpreting what it needs to do.  

Okay, so that may be a highly inaccurate analogy which has my IT manager husband rolling his eyes, but I hope you see what I’m trying to say. There’s nothing you can ‘fix’, no wires which need resoldering. The message is sent correctly but has been misunderstood and misinterpreted at the other end. 

This is what happens with FND. My daughter, who has FND, doesn’t feel stress. She doesn’t have the standard butterflies in the stomach, sweaty palms, or red face. Her body doesn’t allow it. Instead, she begins to tic, has a drop episode (which looks like a faint), an absence episode (where she stares off into space, but you can’t call her back to the present), or a seizure (as most people know and understand them). This is without taking into account the days she wakes up with waves of pain in her body.  

We’re lucky. She doesn’t suffer from paralysis in her limbs, as some do. She doesn’t need a wheelchair. Her seizures are few (maybe one or two a day), compared to some who can have tens or hundreds a day. The rest of the time she’s a typical 15 year old. She goes out with her friends, she competes with her cheerleading team, she sings, she fights with her siblings. 

Her friends have our numbers in their phones, in case something happens. We have to explain to them what action to take if an episode occurs. She has to wear medical alert tags in case she is on her own during an episode. I’ve even drawn up a large flowchart for her school to help them know what process to follow in which scenario (they have it laminated on an A3 piece of paper, that’s how complicated it can get). 

A space to feel accepted

Girlguiding during the difficult times has been a lifeline for us. With Girlguiding she’s able to be a young leader with my Brownie unit. The Brownies say she’s their favourite leader (over 20 years I’ve given to Girlguiding… but yeah, she’s their favourite!).  

They know Barn Owl has weird things happen to her. They know she may tic, and say funny words, or make funny gestures. They’ve seen her have a seizure. They know the leaders know how to handle it. They check on her and go back to their activity, and then pull her back into the enthusiasm of their Brownie meeting once she’s come around.  

Girlguiding has given her a chance to believe she can fulfil her dream of working in early years education, with some adjustments. Girlguiding has helped the Brownies see seizures as part of someone’s life, and they don’t have to be limiting. 

This FND Awareness Day, please consider learning a little more about the condition. There’s research being carried out. There’s hope. There are many who‘ve learnt what triggers their episodes, and how to manage them, but it’s still always there with them.

And this FND Awareness Day, be very, very proud of the work Girlguiding does – it gives young people who may not get opportunities elsewhere the chance to find a space to feel accepted and appreciated for who they are.’ 

Thank you Gemma for sharing your story with us.