Woman Documents Battle Against Degenerative Bone Disease in Viral TikTok Videos

A woman has gained popularity on TikTok by detailing her experience with a rare, degenerative bone disease that affects her jaw. The college student, whose name is Lillian Roman, has posted dozens of videos on the topic, a handful of which have reached millions of viewers.

According to a GoFundMe Fundraiser organized to help fund her treatment, 21-year-old Roman suffers from Idiopathic Condylar Resorption (ICR) of the Temporomandibular Joints (TMJs). Essentially, condylar resorption is a condition in which the bone connecting one's upper and lower jaws begins to disintegrate. If the disease begins spontaneously, without a known cause, it is labeled "idiopathic"—meaning its source is unknown.

Per Arnett Gunson Facial Reconstruction—a California-based oral surgery practice—ICR can result in a range of symptoms, including a receding chin, airway issues, an open bite, and muscle pain. Treatment typically involves surgical intervention to replace the affected bone with a prosthesis.

Roman, who goes by @chunka.munka on the app, posted what became her most viral clip last month. "Just over a year ago I had a perfect smile and I didn't know I was about to lose it to rapid jaw degeneration," she wrote using the video's on-screen text feature.

In the video, she cuts from a picture of her smile before the disease began to progress to footage highlighting the current issues with her jaw. The video has since been viewed 2.6 million times.

In another viral clip, with nearly 300,000 views, Roman described the initial symptoms that prompted her to seek medical attention.

"Basically, what's happening is my condyle bone, which is the bone that connects your upper and lower jaw and creates the hinge that your jaw moves on, is progressively degenerating at a very rapid rate, in my case," she explained.

Roman then demonstrated a major effect of the disease: the impact it's had on her bite. When she attempts to bite down fully, only one of her top teeth, a back molar, is able to touch her bottom teeth. None of the other teeth are able to reach each other, leaving Roman's mouth wide open.

"You can see how recessed my lower jaw has become from my upper jaw," she said, adding: "And yes, that is painful."

"The uneven bite causes a lot of muscle pain because there's a lot of tension happening," explained Roman. "I am also only biting on one tooth, so that tooth...has become very worn down, which causes a lot of nerve pain."

She added that she "can't eat solid food" as a result of the disease and has been "basically limited to liquids and soft foods" for the past year.

In addition to the physical symptoms, Roman added on her GoFundMe page that ICR has caused "emotional distress from losing basic functionality at a very young age" and "from watching this disease alter [her] face."

She is currently raising funds to pay for her surgery in early 2022, as it is not covered by her insurance.

Viewers have flocked to the comments sections of Roman's videos to ask questions, express their support, and even share their own experiences with ICR and related jaw issues.

"I've experienced excruciating jaw pain for about [six] years now and am worried I may have an early form of this," said @cerysburt0.

"I'm so sorry, it's so hard to come to terms with things like this that come out of nowhere and change your life so drastically," commented @shaybae227.

"I found my diagnosis and treatment plan through others who were courageous enough to be transparent about their health online, so I'm hoping to use my platform on TikTok to reciprocate that," said Roman in a recent interview with Buzzfeed.

She told the publication that the experience has made her aware of the importance of "medical self-advocacy." She advised: "Utilize online resources and talk to people that have personally undergone the treatment plan you've been recommended. Get multiple opinions, and don't make a decision until you've explored the pros and cons of all options."

Newsweek reached out to Roman for comment.

Braces
On TikTok, Lillian Roman has gone viral for sharing her experience with a degenerative bone disease that affects her jaw. A stock photo showing a dental patient being outfitted with braces. iStock / Getty Images Plus