Updated 05 March 2018

Woman left in excruciating pain due to cysts growing in her skull

“When I was born doctors noticed something wrong with me but didn’t initially understand what it was."

A nurse has been left looking like she’s ‘crying all the time’ due to a condition that causes the growth of cysts inside her skull and risk popping one of her eyes out of its socket.

Sofia Jingsäter (26) battles with daily chronic pain and her eyes are constantly tearing up due to masses blocking her tear ducts.

She has battled with polyostotic fibrous dysplasia caused by McCune Albright Syndrome since birth.

 This is when abnormal tissue and cysts form in and around the bones.

The condition has caused her left eye to swell, due to the growths beneath her eye socket, nose and jaw – putting extreme pressure on her face.

In a bid to stop her from going blind due to the strain on her optic nerve, last year Sofia underwent surgery to remove numerous cysts in a six-hour operation.

Despite having many of the masses removed, they grow back, often causing her eyes to water due to her blocked tear-ducts.

Sofia, from Växjö, Sweden said that the cysts make her left eye pop-out more, making it much bigger than her right one.

This means that people often notice when she is out in public.

“I think that I’m more aware of my condition when I’m out in public and I think people can see that my face is not normal.

Sofia’s condition was induced by McCune Albright Syndrome. She was diagnosed at the age of five, after years of doctors struggling to discover the cause of her symptoms.

One of the many indicators of the condition included the early onset of puberty.

It also made her bones weaker, meaning they break more easily and she has hyper-pigmentation, which causes café-au-latte spots to appear on her skin.

 “When I was born doctors noticed something wrong with me but didn’t initially understand what it was, I wouldn’t be diagnosed until the age of five.

“As well as the hyper-pigmentation, they realised my hormones were overloading my body, I started menstruating as a young child.

“I got medication for menstrual bleeding from the age of five up until eight. After that I started to get my period, before the age of five I was bleeding on and off.”

By the age of ten, Sofia said the early onset of hormones meant she physically matured much quicker than classmates her age – often leaving her a target for bullies.

“By the time I was ten-years-old, I had grown breasts, pubic hair and was as tall as the teachers in my class.

“I was taller than the other kids, like maybe twice their size. Doctors often explained it to me that in my head I was ten but in my body I was 14-years-old.

“I was so mature for my age that people thought I was strange, disgusting and weird, it went on for years.

Sofia says she was bullied severely at this time.

“I’d race to the showers and dress as quickly as I could in baggy clothing, so no one could see my body shape.”

The fragility of Sofia’s bones means she struggles with daily chronic pain, which is exacerbated by sickness.

“Some days are better than others.

“If I have a cold, the bones in my ribs and back will hurt if I cough or sneeze, as well as making it difficult for me to sleep.”

Later this year Sofia will have more surgery to reduce the pressure caused by the cysts around her left eye as well as to save her sight.

Until then she hopes to raise awareness of the condition and to explain to others why it appears like she’s ‘always crying’.

Source: Magazine Feature