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Actor Lee Dong Gun reveals rare 1% disease, genetic cause confirmed

AKP STAFF
Posted by Alec06 1 hour ago 2,974

On the September 28th(KST) broadcast of SBS 'My Ugly Duckling', actor Lee Dong Gun revealed that he has been diagnosed with ankylosing spondylitis, a rare disease that affects only about 1% of the Korean population.

During the episode, Lee visited a hospital after suffering from persistent eye inflammation. Instead of a routine eye exam, he underwent a full-body X-ray, raising concern among the panelists.

He explained to the doctor, "My eyes get bloodshot, and sometimes my focus is off. When it gets worse, the redness is severe and I become extremely sensitive to light. Looking at light feels painful, and I can clearly feel my vision has declined."


Confessing that he has endured the symptoms for over a year, Lee added, "At first it was terrifying, because my eyesight was definitely deteriorating." 

The doctor responded, noting that the symptoms suggested chronic uveitis, an inflammation of the eye’s middle layer responsible for nourishment and light regulation. "Besides pain, uveitis can also cause inflammation, redness, light sensitivity, and vision loss," the doctor explained.

Lee further shared, "I experience flare-ups at least once a month. The only way it would calm down was by taking additional antibiotics prescribed by the ophthalmologist. I was practically living with eye drops."


The doctor cautioned that while uveitis can occur commonly, its recurrence is unusual and could indicate ankylosing spondylitis—a disease where the spine gradually stiffens and fuses together.

Lee recalled an earlier episode of unexplained pain: "Ten years ago, I woke up in the middle of the night with a stabbing pain in my trapezius, like being pierced by an awl. It hurt just to breathe. Back then, I thought it might be a slipped disc."


The doctor revealed that Lee’s sacroiliac joint showed arthritis at stage 2–3, linked to inflammation caused by the HLA-B27 gene. Despite no family history, Lee was among the rare 1–2% who developed the condition. The doctor emphasized, "Because it is genetic, lifelong management is essential. This is a disease where proper lifestyle management is most important," advising him to quit smoking and drinking, and adopt an anti-inflammatory diet.

Upon hearing her son’s diagnosis, Lee’s mother said with tears, "I didn’t know much about the disease. I thought it was just his eyes. I wish I could suffer in his place," expressing her sorrow.



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