Teen Brushes Off Eye Discomfort—Years Later Comes Life-Changing Diagnosis

Newsweek

8 hours ago

Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources.
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At age 16, Julia Máté noticed something wrong with her vision. But she could never have predicted the diagnosis, and huge decision, that would come decades later.
"I noticed that I had a black curtain covering most of my vision in my left eye," Máté, who is from Hungary, told Newsweek. "They did a surgery called Cryotherapy, which is freezing of a bleeding blood vessel. And that was not successful and later the retina detached and they couldn't save it."
Doctors at the time believed it was a random event. "The doctors just assumed they had a spontaneous random retinal detachment, which didn't really make sense," she recalled.
Despite having no vision in her left eye, Máté moved on, and it wasn't until she was living in the U.K. aged 34 that she began experiencing new symptoms—this time in her right eye.
"I noticed that when I looked at the right wall, I could see specks of grey on it," she said. Concerned that her vision was changing in her good eye, she went to the hospital. "That was my only eye," she said.
What doctors told her next changed everything. "They said I had a lesion... I didn't even know what lesion meant... Lesion is cancer, you know, that's the worst thing you think of," she said.
Then came the diagnosis: Von Hippel-Lindau (VHL) syndrome, a rare genetic condition that can cause tumors and cysts across the body.
"They said we think you have a condition called Von Hippel Lindau syndrome and it can affect your kidneys as well. And I remember leaving the hospital thinking did they just say kidneys? Like it makes no sense... do I have an eye condition that affects my kidneys?" Máté recalled.
A genetic test later confirmed the mutation. "They found a mutated VHL gene. Von Hippel Lindau syndrome is a genetic condition where your body has a mutation in a gene that stops tumors from growing," she said. "When that gene is mutated, it allows tumors to grow basically anywhere—in your brain, in your spine, in your kidneys, in your eyes."
Pictures from some of Julia's videos where she has been sharing her experience with Von Hippel-Lindau syndrome (VHL).
Pictures from some of Julia's videos where she has been sharing her experience with Von Hippel-Lindau syndrome (VHL).
@julia_with_one_i/TikTok
The rare genetic disorder occurs in around 1 in 50,000 births and results in a high quantity of malignant and benign tumors and cysts that appear throughout a patient's lifetime. Most commonly, tumors occur in the retina, brain, spinal chord and kidneys.
It wasn't until seven years later that the condition led Máté, now 41, to an extraordinary decision: to electively remove her left eye, which had long been blind and had become increasingly painful.
"I felt like I didn't have any other way to improve the look of it," she explained. "I had a cosmetic shell but my eye started to not tolerate it was horrendously painful."
Without the shell, she resorted to wearing glasses with foil over one lens to try and improve the appearance of the eye, but earlier this month she underwent surgery to remove the eye completely.
The huge decision resulted in an enucleation surgery, a medical term for the removal of the entire eyeball from the eye socket. This surgery leaves the surrounding eye muscles and orbital contents intact.
After the eyeball is removed, a spherical implant is inserted into the socket to maintain its shape, and later, a prosthetic implant can be fitted restore a natural appearance.
Though Máté expected relief, the emotional toll of the surgery caught her off guard.
"I just thought I would feel relief, I didn't expect a more complex wave of emotion. I really did cry a lot and that was not something I really thought I would do," she said. "I chose this. So why am I feeling like this? I was confused, kind of conflicted. Do I have a right to feel sad if I made a choice?"
As she continues to recover, Máté has made the extraordinary step to share her journey openly online, posting updates on her TikTok page.
"I wanted to find someone who went through this [and] I couldn't find an account where someone documented the entire journey from day-to-day. So I wanted to educate people. Also, I want to raise awareness for VHL, because no one knows about it," she explained.
The response has been overwhelming as people have shared messages of support and thanks for Máté's videos.
"So many people send me messages and are interested in following. They watch every video and cheer me on, people can really be amazingly kind," she said.
Máté is now looking ahead to August, when she'll be fitted for a prosthetic. "They basically put some stuff in there that hardens, and then they can create a prosthetic to match the exact shape and size. They paint basically an eyeball on it," she said.