The woman with rare diseases has had more than 300 surgical interventions and spends a bottle of sun protection per day: “Every point became a tumor”

The patient with diagnosis of xeroderma pigmentally 3 years old reveals the dream of seeing the sea

At 3 years old, the housewife Juliana Francies Flores da Silva received a diagnosis that transformed her life: Pigmental Xeroderm. “He changed everything. At the time, it was very difficult not to be able to play on the street with friends. And even carefully, my illness was advancing,” he recalls.

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Disease is a rare condition that makes skin extremely sensitive to the sun, it has genetic origin and is not contagious. The first signs usually appear in childhood and include intense sunburn, excessive freckles in the uncovered areas and the first emergency of points and skin lesions, as in the case of Juliana.

“The chicks got married on the skin, spread and took control of the whole body. Every point turned into tumors,” he recalls.

It is estimated that the prevalence of this condition is about one on a million people in the United States and Europe. In countries like Japan, the number is much higher: about one out of 22,000, due to the presence of a specific genetic variant in the population.

In Brazil there is no consolidated epidemiological survey, but there are areas with a great concentration of people with pigmental xeroderma. The most surprising example is the district of Araras, in Faina, inside Goiás, considered the place with the greatest incidence of the condition. Experts attribute it to the geographical isolation of the region and the high rate of marriages among family members.

There is no cure for the pigmental xeroderma. The treatment focuses on the prevention of exposure to the sun, the frequent dermatological follow -up and, if necessary, the surgical removal of suspicious injuries. Due to the condition, Juliana suffered hundreds of surgical interventions. Until the age of 25, there were 300 procedures. Today, at 33, he says he no longer knows how many surgical interventions he has undergone.

It is also necessary to perform follows -Up ophthalmological and neurological, since the condition can affect other organs. Five years ago, he also began to feel extreme tiredness, a condition that refers to heart failure that he developed with the progress of the disease. “Today I already do physical activity, but always with accompaniment of cardiologist, dermatologist, ophthalmologist.” He also had to drop a job in which he brought weight not to physically manage.

“I have to stay at home all day, I can only go out at night. I made the dream of getting to know the sea. I will not be able to do it,” reveals the resident of iPorá (Go). He says that the cure routine provides for the use of a lot of sun protection – “a 50 ml bottle per day” – which came out of the house with blouses, hat and sleeve glasses.

Looking for improvements in the quality of life, consultations With experts and exams, Juliana participated, for the third consecutive year, a service force in the municipality of Faina (Go), more than 200 kilometers from the city where the housewife lives. The journey, which lasts about four hours, pays: “We end up discovering things we didn’t know on every trip. My biggest relief was to have an ultrasound and no emergency, no melanoma. He showed that I can take care of myself”.

In the Task Force, led by volunteer dermatologists of the Brazilian Society of Dermatology (SBD) and made in collaboration with the brand of dermatological products of La Roche-Posay, the families affected by the rare genetic conditions have been able to perform surgery and specialized exams, as well as participants in educational activities.

“Joint efforts have a strategic role: bringing diagnosis, treatment and orientation in places where access to the dermatologist is limited”, explains the president of the SBD Carlos Bari.

According to him, the theme has acquired even more relevance since the World Health Organization (WHO) approved in 2023 unprecedented resolution that recognizes the health of the skin as a global priority. “This strengthens the importance of understanding that the skin is not only aesthetic-it is health, the quality of life and well-being,” he says.

Although the Xeroderma pigmentally rarely is rare, the doctor warns the general care of the skin for the entire population. “The sun is not an enemy: it is essential for life, but unprotected exposure is a great risk. In Brazil, where we have an intense sun throughout the year, we must change the culture that Tan is synonymous with health. The real health of the skin derives from photoprotection, not from the exhibition.”

Source: Terra

Ben

Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.