Emily Newman, 25, from Gatwick, Sussex, was living her best life, focusing on fitness and enjoying newly-wedded bliss with her firefighter husband James Newman, 28. However, a sudden seizure that led to her being rushed to hospital marked the beginning of an unexpected and life-altering journey.
Despite numerous scans and tests, medical professionals were initially baffled by her condition. It wasn’t until Emily faced terrifying bouts of paralysis, rendering her unable to move her legs for up to eight days, that she sought a private diagnosis.
The results came as a shock: functional neurological disorder (FND), a complex condition where the brain struggles with sending and receiving information correctly. Doctors pointed to “work stress” as a potential trigger for her abrupt symptoms.
Now, Emily’s daily life is marred by slurred speech, tic attacks that can see her hitting herself for hours, and mobility that is dependent on a walking stick or wheelchair. Working in finance, Emily reflects on her condition with a heavy heart: “It’s such as dire condition.”
She mourns the loss of the life she envisioned for herself, saying: “It’s not what I expected my life to be at all. I’m going through grieving different parts – the life I thought I was going to live, the life I’m currently living and before,” reports Kent Live.
Before her health took a turn for the worse, Emily had been dedicated to getting into shape, especially for her wedding. She recalls: “I had decided I was going to get in better shape for myself and my wedding. I was running three times a week. I was working out every day.”
In November 2023, Emily experienced a seizure without realising it. She also deals with postural tachycardia syndrome (PoTS), which causes her heart rate to increase upon standing, and had attributed her fainting spells to this condition.
She recalled the incident: “I was convulsing. I thought to myself ‘it’s that’.”
However, after suffering three more seizures in one day and calling an ambulance, her condition puzzled doctors. Despite testing for multiple sclerosis (MS) to explain her symptoms, the results were inconclusive.
Emily described the severity of her condition: “The week after I had a seizure lasting six to eight hours. I got bouts of paralysis.”
“I was paralysed in my legs for eight days. I thought ‘I can’t live my life like this’.”
Seeking answers, Emily consulted a private doctor in December 2023 who diagnosed her with Functional Neurological Disorder (FND). The prognosis was uncertain, as the doctor explained: “He said there is a 33 per cent chance it will get better, 33 per cent chance it will get worse and 33 per cent chance it will stay the same.”
When asked about potential triggers for her FND, Emily mentioned work stress but no specific traumatic events. Currently, she faces daily challenges with speech, walking, and tics, and shared: “My speech is delayed and slurred. Sometimes I can’t communicate at all.”
Unfortunately, Emily cannot afford treatments, and there is no known cure for FND at present. She said: “If my speech goes it comes back in three to six hours. I have tics as well. I have tic attacks. The other day I was progressively hitting myself for two hours. It was really painful.”
Emily revealed her daunting symptoms leave her family “terrified” pointing out she now experiences an average of 10 seizures a week. She said: “Last week I had 25 in one afternoon.”
Despite the challenges, Emily maintains a positive outlook, insisting: “I’m trying to do everything I can in different ways. You try and take every day as it comes. I still want to be me and be who I am.”