A woman has shared her “excruciating” battle with a rare disorder that causes her to have little-to-no control over her body’s reflexes.
Mum-of-one Karen Long has been left fearing for her life each time she leaves home, due to a debilitating condition which causes her entire body to seize up like a statue.
The part-time blogger recalls her ordeal starting in 2013, when she suffered a shocking fall and slammed face first into the hard concrete road.
Over the next two years, her condition worsened and soon, Karen was rushed to the Royal Hampshire Hospital after her legs began shaking “uncontrollably” for an hour.
Now, she claims her entire life has been put on hold, including missing out on her son, Ruben, 18, moving to university.
Karen is sharing her harrowing battle in a bid to raise awareness for the syndrome that has made her unable to control her own body.
“I woke up and my legs wouldn’t stop shaking, it was excruciating,” Karen, from Romsey, told NeedToKnow.Online.
“From the waist down, I had no control over my body at all and I thought I was having a non-epileptic seizure.
“I felt hot and sick with the unbearable pain, where I started to cry because it was getting ridiculous.
“It was the scariest moment of my life, as I had no idea what was going on and no one could tell me why this was happening to me.”
After the initial fall, Karen started to notice a pattern and found that whenever she was startled, her bum would tense up, followed by an immediate plummet to the ground.
If a car horn beeps or her slipper falls off, the mum knows what will happen next – and as the fear is embedded into her memory, she avoids leaving her home.
Feeling lost, she decided to seek out medical advice and although she underwent MRI scans, as well as going to a chiropractor, they believed it was all down to anxiety.
In August 2015, a few days into her hospital stay for the aforementioned episode, a neurologist offered their advice and after many scans, diagnosed her with Stiff Person Syndrome (SPS).
The condition, which is a rare, progressive neurological disorder, affects 1 in 200,000 people in the UK according to CPD Online College and is the result of a failed autoimmune response.
It’s estimated that while there are treatments available, including intravenous immune globulin (IVIG), a form of antibody treatment that she receives monthly, sufferers will have a life expectancy of six to 28 years from onset of the condition.
Now, Karen is focusing on making the most of the time she has left with her partner, Andy, 63 and her son – but with the fear of her body seizing up at any minute, it hasn’t been easy.
She said: “It’s the mental stress of it all, as I don’t want to go out due to the fear of falling down.
“As soon as my feet touch the pavement outside my home, panic sets in and I can’t move.
“I live in this heightened state of stimulation all the time and it’s ruined my life.
“I think the hardest part of this has been living in such a rigid routine, as each time I’m startled, my body goes into spasm.
“Every minute of the day has to be planned and there’s no time left for spontaneous meals out or even helping my son pack for university.
“It was heartbreaking not to be able to drive him down and say goodbye properly – one of my dreams as mum was taken away from me.”
In April 2016, she began treatment with daily muscle-relaxer medication and intravenous immunoglobulin, a plasma transfusion, with antibodies infused each month.
As she had to leave her full-time job as a sales and marketing manager due to her treatment schedule, the mum opened up her own cleaning business – but was then deemed unfit to work last year.
While she’s lost many friends along the way, Karen is thankful for the ones who have stuck by her side – and especially Andy, who has supported her each step of the way.
In December 2022, iconic singer Celine Dion opened up about her battle with Stiff Person Syndrome and Karen says this helped many sufferers, including herself, feel less alone in their journey.
She also helps run a Facebook group called SPSUK and with over 1,000 members, it’s given hope that a cure will be found one day.
Karen added: “If sharing my story makes just one person question their symptoms, it will be all worth it.
“When I got my diagnosis, I burst into tears of relief as I was convinced for so long that it was all in my mind.
“Now, as I can’t feel both of my knees due to the many falls, I’m very careful about where and when I go out.
“If I’m asked out to dinner, I’ll make an excuse not to go, but with certain friends, I will visit places that I’m familiar with to eliminate any fear.
“It’s a condition which little is known about, but all it takes is one spasm to hit a vital organ at any point for it to be game over.
“But I’ve learned that no matter what, you’ve got to get up and show up for those who need you.
“I’m so proud of my son and it’s been difficult raising him through all of this, but I can’t wait to one day hopefully watch him succeed and start his own family.
“The hard work I’ve put in on my darkest days has all been worth it, as I’ve been able to find the light through him.”
