3 days ago
Woman Desperate for Diagnosis for Years—Then Notices Ear Looks Different
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For a decade, Holli Barron went in and out of doctor's offices, desperate for answers to a growing list of mysterious symptoms—throat swelling, rashes, extreme fatigue, and more. Despite receiving multiple diagnoses over the years, no treatment brought relief, leaving her feeling as if she was locked in a battle she couldn't win.
That changed recently when she developed a new and unusual symptom: red, hot ear cartilage. It led to the correct diagnosis—relapsing polychondritis—a rare condition that causes repeated episodes of swelling and inflammation in cartilage and other tissues throughout the body, affecting fewer than 5,000 people in the U.S.
Barron shared her experience in a TikTok video (@therapyandthings) that has been viewed over 526,000 times. She wrote: "When you send your rheumatologist a photo of 1 new weird symptom and suddenly after YEARS of no diagnosis you're getting seen by two specialists." She added that she underwent multiple tests and two CT scans in just 48 hours.
"Living with a rare autoimmune disease also takes an emotional toll," the South Carolina mom told Newsweek.
"Going years without a diagnosis can be difficult," Barron added, stressing the importance of caring for the mind, body, and soul, while navigating chronic illness.
Two screenshots from the viral video showing Holli Barron looking puzzled and shocked.
Two screenshots from the viral video showing Holli Barron looking puzzled and shocked.
TikTok/@therapyandthings
Sharing Her Story Online
The licensed mental-health counselor later posted another video featuring photos of her ears. She warned viewers not to panic if they experience redness, as it was just one of many symptoms she had.
"Prior to the ear redness and pain," Barron said, "including inflammatory arthritis, Raynaud's Phenomenon, tinnitus, episodes of minor vertigo, extreme fatigue, sensation of throat swelling, pain on the bridge of my nose.
"Following CT scans, it was determined that I also have calcifications in the cartilage of my trachea," she added.
The cartilage of Barron's ear is red and the lobe is the usual color.
The cartilage of Barron's ear is red and the lobe is the usual color.
Holli Barron
Understanding Relapsing Polychondritis
The Genetic and Rare Diseases (GARD) Information Center says relapsing polychondritis (RP) can also affect the airways (trachea), rib cartilage, eyes, heart, blood vessels, skin, kidneys, and nervous system. Signs and symptoms vary widely between individuals, depending on the areas involved.
The exact cause is unknown, though both genetic influences and unidentified factors are believed to play a role. RP often occurs alongside autoimmune disorders.
"Autoimmune disease symptoms can tend to overlap," Barron said. "So I don't want to say I was 'misdiagnosed,' but it did take many years to land at this correct diagnosis. Some previous diagnoses I was told included seronegative rheumatoid arthritis, lupus-like illness, tendinitis, and inflammatory arthritis."
Living with an autoimmune disease while juggling mom life, a Ph.D., and work can be "challenging," Barron said—especially during flare-ups.
"The fatigue and pain can be debilitating at times, making everyday tasks more difficult to complete," she added.
How Is Relapsing Polychondritis Treated?
Since only around 5 percent of rare diseases have FDA-approved treatments, finding a health-care team that can effectively manage symptoms and overall well-being is critical. People with rare diseases often face delayed diagnoses, limited treatment options, and difficulty finding providers with the necessary expertise. Building a care team that understands the patient's needs can greatly improve quality of life.
For now, Barron will continue taking hydroxychloroquine, a disease-modifying antirheumatic drug (DMARD) that can reduce the pain of arthritis and swelling and prevent joint damage.
"I will also be adding an immunosuppressant medication called Enbrel to hopefully slow the progression of the disease," Barron said.
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