People with rare lung diseases have a long way to go before they receive a correct diagnosis. On average, 36% of patients pulmonary fibrosis Idiopathic (IPP), scleroderma associated with lung disease (IPD-ES), and other interstitial lung diseases (IPDs) suggest that the longest step was between diagnosis and initiation of treatment.
Then appeared the time between suspecting the disease and requesting and performing certain tests (26%). From a medical point of view, the longest stage in a patient’s journey is pre-diagnosis.
The figures are part of a “Panorama of Rare Lung Diseases in Brazil” survey, conducted by German drugmaker Boehringer Ingelheim with the Datafolha Institute. In all, 101 physicians, 90 patients, and 50 caregivers participated in the analysis.
Women constituted the majority (78%) of the patients interviewed, with a mean age of 51 years. About eight in ten are not economically active – which can be caused by the lung involvement that diseases can cause.
From symptoms to diagnosis
According to the survey, in the case of idiopathic pulmonary fibrosis, the average time to diagnosis is three years. According to physicians, 68% of patients with scleroderma with pulmonary involvement take a year to start treatment and 42% report a delay of approximately four years.
In other interstitial lung diseases, 28% of patients took more than four years to obtain a correct diagnosis and the average age at diagnosis is 43 years.
10% of these patients stated that deterioration occurred within two years. Upon contact with mold, which can cause one of the most common types of interstitial lung disease, Pneumonia Due to hypersensitivity, 36% of patients have or have had Permanent contact with mold.
The main symptoms and when to seek help
These three rare diseases have common symptoms. the most important exhaustion during physical exertion, fatigue, lack of air NS dry coughAccording to Adalberto Rubin, chief of the pulmonology service at Santa Casa de Porto Alegre.
“These are the symptoms that the three diseases have most frequently, but there are other signs that are specific to each,” he explains.
Robin says that when fatigue goes out of pattern and other respiratory symptoms appear, it’s important to have a doctor’s appointment. “A specialist can make a diagnosis and provide appropriate treatment,” he says.
Among the main symptoms, the survey showed that it was almost unanimous: 97% of people with the diseases evaluated had or experienced fatigue, tiredness or weakness and 96% had shortness of breath. Cough is another very common symptom, seen in 81% of patients.
Limitations and Risk Factors
Physical exertion is most mentioned by patients in relation to the limitations that the group of diseases can cause: 69% have limitations in physical activities and 33% in household activities.
Among the main risk factors for disease, 42% of patients said they smoked or had negative contact with tobacco.
Risk factors reported by patients and caregivers are exposure to smoke and chemicals (93% of patients and 80% of caregivers).
“Some types of interstitial lung disease have a connection to chemicals like ammonia as a limiting factor.socianatos and heavy metals,” explains Robin.
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