:quality(85)//cloudfront-us-east-1.images.arcpublishing.com/infobae/JKGNWTKRENFWJNFLKB254SKRGU.jpg "Myelofibrosis: what is this rare disease that affects the bone marrow?")
According to data from the World Health Organization (WHO)about 9,000 ago rare diseases (EPOF) which affect approximately 7% of the population of the planet. In turn, the information provided by the Argentina Ministry of Health indicates that in our country the incidence of EPOF is 1 in 2000 people. Among these pathologies is the honeyofibrosewhich changes the production normal of blood cells of body and prevents the proper functioning of the bone marrow by the presence of fibrous tissue.
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Therefore, they may appear symptoms as anemia and bleeding problems, in addition to a high rate risk of infections. In these images there is a clear genetic component, and the disease may be primary or secondary to others in the bone marrow, such as polycythemia vera or essential thrombocythemia.
Although myelofibrosis is usually diagnosed in people aged 50 and 80 years old, Recently, an increase in cases among younger patients has been observed due to greater medical checks and an increase in the degree of suspicion from the medical community.
About a third of patients have no symptoms at the time of diagnosis, since this disease manifests level there silent: as you progress, the signs become more noticeable. In general, the most common is abdominal swelling due to enlargement of the spleen.
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Other symptoms to watch for include extreme fatigue, weakness, bone pain, weight loss, fever, susceptibility to infection, bleeding episodes, night sweats, and itchy skin. In later stages of the disease, liver enlargement may also occur.
It is very complex to reach a definitive diagnosis of this pathology. The first step is a physical examination, in which an enlarged spleen may be noted. Subsequently, studies such as complete blood count (CBC) with blood smears and genetic testing can be performed. Also, a bone marrow biopsy is needed to come to a definitive approach and rule out other causes of symptoms.
Rare diseases affect 300 million people worldwide
Because the origin of many of them is still unknown and the symptoms are generally similar to other common pathologies, in most cases reaching a diagnosis can take between five and ten years.
He bone marrow transplant is one of the possibilities treatments myelofibrosis. In person youth, stem cell transplants improve the prognosis and can cure the disease. However, many patients do not qualify for this procedure, either due to age, disease stability, or other health issues. Other treatment approaches may involve surgical removal of the spleen, blood transfusions, radiation therapy, and chemotherapy.
From Argentine Civil Lymphoma Association (ACLA)as part of their ongoing awareness campaign, they seek to raise awareness about myelofibrosis and support the patients grouped together in the entity.
Remember that the last day of February commemorates the “World Rare Disease Day”an initiative that aims to make visible, to raise awareness there encourage early diagnosis and prevention of pathologies that are infrequent or have a low incidence in the population. A disease is considered rare when it affects less than 5 in 10,000 people.
According to data from a recent survey, Argentineans with rare diseases take on average 10 years by accessing a diagnostic differential since the appearance of the first symptoms: 3 out of 10, following a delay in diagnosis, receive neither support nor treatment; 31% see their illness or symptoms worsen and 23% receive treatment that is not adequate.
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