Portuguese 
Maria Paula Vieira Met Lucas on Tinder just before the pandemic, received a referral to a dermatologist, and discovered in 2023 the source of the pain she had faced since childhood.
Shortly before the Covid-19 pandemic, communicator Maria Paula Vieira joined Tinder looking to meet someone interesting. Among the profiles was Lucas, then a medical student. The two matched, started messaging, and quickly developed a friendship that intensified during social isolation.
What seemed like just a casual encounter through the app would eventually interfere with a search that had begun nearly three decades prior. Maria Paula told Lucas she had experienced chronic pain since age 3, faced severe skin alterations, and had seen numerous doctors without uncovering the cause. That conversation prompted Lucas to remember the dermatologist Paulo Ricardo Criado, his former professor, who would later investigate her condition and reach the hypothesis of an extremely rare combination of diseases.
Pain Began at Age 3 and Initiated a Diagnostic Quest Spanning Nearly Three Decades
Maria Paula recalls that the first symptoms appeared when she was just 3 years old. Her hands burned as if they were “on fire,” and later, pain and skin flaking emerged. Initially, the family sought out a dermatologist, but the lack of answers led to a series of consultations, tests, treatments, and imported medications.
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Several rare diseases were considered over the years, but no diagnosis was confirmed. Without knowing the exact origin of her symptoms, Maria Paula received treatments focused mainly on pain control and maintaining mobility. Intensive physical therapy, according to her, ended up having the opposite effect, as the exercises increased her pain while her skin thickened progressively.
Orthotics, Walker, and Wheelchair Became Part of Daily Life as Mobility Decreased
The progression of symptoms made it increasingly difficult for Maria Paula to stand and exercise. She started using orthotics and later transitioned to a walker, while her feet suffered from atrophy. A wheelchair eventually emerged as an alternative to preserve her autonomy amid the limitations imposed by her condition.
In her early twenties, after numerous consultations without answers, Maria Paula and her family decided to halt the search for a diagnosis. The focus shifted to palliative care, pain management, and attempts to maintain her quality of life. She compares that time to sailing a rudderless boat, as she did not know what illness she was facing, which treatments might work, or whom to consult.
A Tinder Match Brought Maria Paula Closer to a Medical Student Who Would Recall a Dermatologist Professor
Her journey took a different direction when Maria Paula met Lucas on Tinder shortly before the pandemic. Social isolation led them to communicate more frequently, until she decided to explain her disability, chronic pain, and the lengthy search for doctors and hospitals.
Lucas acknowledged that the issue went beyond his understanding as a student. However, during a conversation about the possibility of seeking another dermatologist, he remembered Paulo Ricardo Criado, a professor at the Faculty of Medicine of ABC. Criado had taught a class on dermatological manifestations of systemic diseases, a topic Lucas related to the symptoms described by his friend.
The Dermatologist Did Not Find an Immediate Answer but Decided to Research the Symptoms Presented by Maria Paula
Maria Paula had already consulted numerous specialists when she arrived at Paulo Criado’s office. She recounted her history from childhood and described the manifestations she had faced for decades. The dermatologist could not immediately identify the cause either but decided to investigate the case before the patient’s return.
Criado turned to PubMed, a database of scientific literature used by researchers and healthcare professionals. He combined keywords related to the symptoms and filtered studies on different groups of diseases until he found papers describing an association compatible with the condition presented by Maria Paula.
A Scientific Study Linked Olmsted Syndrome to Erythromelalgia and Presented Cases Similar to Maria Paula’s
In 2023, Criado presented a French study to the patient that described cases involving Olmsted syndrome and erythromelalgia. Maria Paula noticed similarities between her journey and the stories of the young individuals featured in the research, recognizing symptoms that had accompanied her since childhood.
Olmsted syndrome can cause excessive thickening of the skin on the palms of the hands and the soles of the feet, even affecting mobility. Erythromelalgia, on the other hand, causes redness, heat, and episodes of burning pain, especially in the extremities. The association between the two conditions is extremely rare, with the first known case described in 2014.
Alterations in TRPV3 Helped Explain Why Common Stimuli Could Cause Intense and Persistent Pain
Paulo Ricardo Criado explains that these conditions may be related to alterations in TRPV3, a channel present in nerve endings involved in transmitting sensory stimuli. When a change increases its activity, what would normally be perceived by the body as a simple tactile stimulus can trigger intense and persistent pain.
The rarity of these conditions also highlights the challenges faced during the investigation. As of June 2019, only 106 cases of Olmsted syndrome had been described in the global scientific literature, according to a review published in 2020. Erythromelalgia is more common, though still rare, with estimates ranging from 0.36 to 1.3 cases per 100,000 people.
Genetic Test Conducted in October 2023 Confirmed in December the Answer Sought Since Childhood
The clinical picture was consistent with what Criado had found in the literature, but the hypothesis still required genetic confirmation. Maria Paula underwent testing in October 2023 and received the results two months later, on December 19, while she was having dinner.
The notification on her phone finally revealed the genetic alteration related to her symptoms. After nearly 30 years, Maria Paula was diagnosed with primary erythromelalgia associated with Olmsted syndrome, marking the end of a long journey that began when she was just 3 years old.
Diagnostic Odyssey of Nearly 30 Years Ended with Treatment and New Life Plans
Maria Paula’s journey represents what Medicine refers to as a diagnostic odyssey, a term used to describe the path from the first symptoms of a rare disease to its identification. In Brazil, this process averages 5.4 years, according to a study published in 2024 involving over 12,000 people with rare diseases.
After the confirmation, Maria Paula began treatment and reports a significant change in her routine. Today she is able to engage in physical activities, go out more, travel, and form new connections. For someone who spent so many years primarily focused on managing her suffering, the most important transformation has been regaining the ability to make plans and look towards a future beyond the pain.
The match on Tinder did not provide the diagnosis, but it connected Maria Paula with someone who knew the specialist capable of resuming the investigation. A conversation started casually on the app ultimately linked almost three decades of symptoms, scientific research, medical literature, and a genetic test to the answer she and her family had been seeking since her childhood.
What stands out most to you in this story: Maria Paula spending nearly 30 years living with pain without a diagnosis or a Tinder match initiating the connection that helped lead her to the discovery of her rare disease? Share your thoughts!
