Karen Long was diagnosed with Serious Person Syndrome 12 years ago.
Singer Celine Dion recently revealed that she has been diagnosed with a rare neurological condition called the Stiff Person Syndrome (SPS) that restricts her singing abilities. But Karen Long, from Southampton, has been living with the disorder for more than a decade and is too scared to even cross the road. She has been brave enough to talk about her health condition, which has taken 12 years of her life. SPS is so rare that it affects one in a million people.
Ms Long cannot do everyday tasks such as crossing the road as she fears she could turn into a human statue as her persistent spasms cause her muscles to "lock into place" which causes her to fall over, according to Wales Online.
"I have the heightened stimulus - so if someone makes you jump, you go into a spasm mode, well, I live in that. If I was outside and someone beeped their horn, I would fall," she was quoted as saying by the outlet.
"With SPS, you fall like a statue, you have no chance and your body freezes, you go down flat. I can't cross an open space so I can't cross the road. If I need to go anywhere, I will go the longest way around so I'm next to a wall because physically you go to step and the antibodies in your body say no," she further said.
SPS symptoms develop over a matter of months or years, normally between the ages of 30 to 60, and can remain stable in some cases or get gradually worse in others.
The often painful muscle spasms last minutes or even hours and can happen randomly or be triggered by events such as loud noises, light physical contact, stress or situations requiring a heightened emotional response, according to the US National Organisation for Rare Disorders (NORD).
Ms Long started getting back pains 12 years ago after which she began walking with a hunch, Wales Online said. She went undiagnosed for five years - only finding out her rare condition by chance.
There is no cure for SPS, so Ms Long is relying on muscle relaxer medication, which she takes daily, and undergoes Intravenous immune globulin (IVIG) treatment every four weeks.
She does beauty blogging to pass the time and is open about her invisible illness online.