By Josh Saunders
A nurse has been left ‘crying all the time’ due to a condition that causes cysts to grow inside her skull and risks her eye popping out of its socket.
Sofia Jingsäter, 26, from Växjö, Sweden, battles with daily chronic pain and says her tears, which are caused by the masses blocking her tear ducts.
She has battled with polyostotic fibrous dysplasia caused by McCune Albright Syndrome since birth, where abnormal tissue and cysts form in and around her bones.
The condition has caused her left eye to swell, due to the growths beneath her eye, nose and jaw – putting extreme pressure in the one side of her face.
Last year she had surgery to remove numerous cysts in a six-hour operation, without which she risked going blind due to the strain on her optic nerve.
Despite having many of the masses removed, they can grow back – as well as leaving her to contend with chronic pain and often tearing-up due to her blocked tear-ducts.
Sofia said: “I have cysts that grow in my face, mostly on the left-hand side so my jaw bone, under my eye, in my arms, ribs, back and hips.
“They vary in size and grow with my bones, the ones behind my eye could cause blindness or the loss of my hearing if it grows too large.
“It’s really putting a lot of pressure on my face, it was constantly swollen and tearing up as my tear ducts are blocked.
“The cysts make my left eye pop-out more, as well as swelling the skin beneath it, making it much bigger than my right one, so people often notice when I’m out in public.
“The cysts make my left eye pop-out more, as well as swelling the skin beneath it, making it much bigger than my right one.
“I think that I’m more aware of my condition when I’m out in public and thinking people can see that my face is not normal.
“There were multiple cysts under my eye, to the side of it and in my nose, in my recent surgery they took out as many as they could in six hours. The one in my jaw was the size of a grape.
“I had the cysts removed from under and around my eye to make my eye fit into the eye-socket better.
“It was swollen, constantly red and tearing-up the whole time before, almost every day, then when I had a cold it was even worse running more and more.”
Sofia’s condition was induced by McCune Albright Syndrome and diagnosed at the age of five, after doctors struggled to discover what caused her symptoms.
One of the many indicators included the early onset of puberty after hormones began overloading her body.
In addition to making her bones to be weaker, meaning they break more easily and hyper-pigmentation, which causes café-au-latte spots to appear on her skin.
Sofia said: “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 menstrual bleeding as a young child.
“I did get medication for menstrual bleeding from the age of five to eight. After that I started to get my menstrual bleeding, before the age of five I did have bleedings on and off”
By the age of ten, Sofia said the early onset of hormones left her physically maturing quicker than other children her age and often left her a target for bullies.
She added: “Due to the hormone imbalance 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 10 but in my body I was 14.
“I was so mature for my age that people thought I was strange, disgusting and weird, it went on for years.
“Because of the bullying I was facing I would race to the showers and dress as quickly as I could in baggy clothing, so that no one could see my body shape.”
The fragility of Sofia’s bones means that she struggles with daily chronic pain, which is exacerbated by sickness.
She said: “The pain is something I deal with daily, 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.”
Sofia will have more surgery in the future to reduce the pressure caused by the cysts around her left eye and save her sight later this year.
Until then she hopes to raise awareness of the condition, chronic illness and to explain to others why it appears that like she is ‘always crying’.
Sofia said: “The cysts are near the optic nerve, so if they keep pushing it could make me blind.
“You can see how deformed my skull looks in scans and the overgrowth of the bone around my eye, it’s a weird mess.
“Future surgeries will remove more of the cysts I have more underneath my left eye, once removed it should hopefully stop my eye tearing up all the time.”
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