Summary Background Better understanding of the experience of people living with hidradenitis suppurativa (HS) is essential to identify gaps in current patient care and inform healthcare decision‐making. Aim To describe the patient experience of individuals with HS, including their path to diagnosis, symptom control, treatments, healthcare utilization, patient needs and impact on quality of life. Methods The Hidradenitis Suppurativa Patient Experience survey was created, extensively reviewed and disseminated through engaging HS‐related patient organizations, physician groups and social media groups. Results In total, 537 respondents completed the survey; the mean age was 38 years (range 14–73 years) and 95% (510 of 537) were female. The mean number of treatment types per respondent was 15, and included antibacterial soaps (93.3%; 431 of 462), avoidance of tight clothing (90.9%; 419 of 462), use of oral antibiotics (79.7%; 368 of 462), nonprescription drugs (79.7%; 368 of 462) and topical antibiotics (77.1%; 356 of 262). Pain was poorly controlled in 46% of respondents (184 of 401). HS had a negative impact on the ability to work and attend school for 81% of respondents (337 of 415), with 59% (245 of 415) missing at least 2 days of work a month and 16% (66 of 415) missing > 11 days of work. The mean number of misdiagnoses per respondent was three and the median time to diagnosis was 10 years. Conclusion Individuals with HS experience a delay in diagnosis and have suboptimal control of the disease. We propose 11 recommendations to improve diagnosis, treatment and quality of life for individuals living with HS.

Os autores apresentam um caso de uma paciente de 17 anos de idade, vítima de traumatismo crânio-facial, que evoluiu com os sintomas e sinais da síndrome da fissura orbitária superior. Tratada conservadoramente, obteve recuperação parcial dos movimentos oculares num período de três meses de seguimento ambulatórial.

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Introduction:The Mucoepidermoid Carcinomas (MEC) represent about 5% of all tumors in the salivary glands. It is an aggressive lesion and must be considered as a diagnosis hypothesis in the oral mucosa proliferative lesions. The early diagnosis and the correct management of this neoplasm are key factors for the prognosis. Wide local resection and eventually postoperative radiotherapy is the choice treatment. Objective:To report the case of a patient with mucoepidermoid carcinoma of oral cavity, exteriorizing through the mouth and being submitted to surgical exeresis and radiotherapy that evolved to death on the fourth month from beginning of the treatment. Case Report:CT, 47 years old, white woman was forwarded to the ORL service of the HSJA after a critical bleeding episode in oral cavity. She reported the appearing of a mass with fast and expansive growth in a topography of canine fossa for +/-06 months, associated to the loss of 10 kg. Patient dehydrated, pale with pediculated tumoration of +/-06 cm, firm consistency, painless upon palpation and bleeding. Chronic alcoholic and smoker. Non-palpable cervical lymph nodes. Faced with the case we opted for a surgical resection of the tumor and the performance of histopathological exam that confirmed mucoepidermoid carcinoma of minor salivary glands. The patient was sent to the radiotherapy service; but she abandoned the treatment and evolved with death 4 months after. Final Comments:In this case, the fast and aggressive growth of the lesion, the size of the tumor and the abandonment of the proposed treatment was determinant for the patient's prognosis.