Penicuik woman’s fight to raise awareness of rare condition

Laura Roxburgh suffers from Functional Neurogical Disorder and wants to spread the word about the condition. (photo: Lisa Ferguson)
Laura Roxburgh suffers from Functional Neurogical Disorder and wants to spread the word about the condition. (photo: Lisa Ferguson)

A Penicuik mother of two with a condition that affects her nervous system has been telling her story in a bid to raise awareness of the little-known illness.

Laura Roxburgh (33) was diagnosed with Functional Neurological Disorder (FND) six years ago. The condition affects how the brain and body sends and/or receives signals.

Laura told the Advertiser of the impact FND has had on her.

She said: “It’s made a massive difference to my life. I was very active before. I got it just after I had my little girl. I was planning to go back to work after having her but I just couldn’t.

“I am disabled now. I have a walking stick. I suffer from pain 24/7. It can get really bad.

“The doctors said this happens to people who were quite active before. And that was me. I was out walking , running a lot.

“So to become disabled so young was quite difficult. I can’t work. I always worked before, I was a care support worker.

“I lose feeling down by left side off and on. I have had quite a lot of falls. I also have tremors, stammers, problems with my speech and blackouts.

“I had another little girl while having FND but it was too much for my body. The doctors told me I can’t have any more babies. Everything is a long battle. It’s really hard. I can never plan anything and I always have to cancel things.

“You get a feeling of disconnect from the world, cognitive difficulty, brain fog, forgetfulness, poor concentration, every day is a constant battle to live a normal life .”

Given the lack of awareness of the condition, Laura has felt alone since being diagnosed with FND. She said: “I had been to see a doctor for about a year and they didn’t know what was wrong. It was quite a long battle.

“When I did find out, it was quite scary. My brain is no longer like it was before. I have family support but I feel like I have been left to fight this myself as there is no support out there.

“I am involved in a Facebook page to make more doctors aware of it and let people know all about it. We are just trying to get the word out.

“As a lot of doctors don’t seem to understand it. A lot of people turn up in A&E and doctors don’t believe them. Trying to find the right support system to help and getting people to understand, it’s quite difficult.

“The Facebook page has been a big help to me as there are not a lot of people out there that understand FND. There are a few pages now but that was one of the first. It’s really good.

“So this lets people, who suffer from it, connect and it gives advice. It’s really good. One day I just typed FND into Facebook and I came across it.”

Single mother Laura has to care for her daughters Molly (6) and Daisy (2). She added: “My two kids have only known me unwell. The girls’ dad comes up and helps a lot. I just phone whenever I need him. I have full support from family, the childminder, nursery and school.

“I’ve had a occupational therapist out to help with equipment in the house to try to make some things a little better for me, so I’m just waiting on this coming. I’ve also had extra railings put on my stairs as sometimes I am stuck in the house for days, unable to get down stairs as I’m in an upstairs house.

“I use a walking stick which I found difficult to get used to do as I’m so young, but it helps me a lot.”