Paula Desianu and thalassemia: «Transfusions keep me alive»

Paula Dasianu, known on social media as @pappudash

Rare diseases remain little known to the general public today, despite their impact on the lives of millions of people and their families. For this reason, testimonials that are written in the form of personal data suitable for the purpose of informing and raising awareness take on particular value. This is the case of Paula Dasianu, a content creator who is also social and come @pappudashthe next step is to make the final decision on the basis of the conviviality of beta thalassemia major, without the serious genetic blood disorder following the transition period and continuation of control. This rare disease, the contribution of a spotlight with pathology research and a clinical study of information for a patient and a caregiver by Francesco Macchia, president of the Rare Diseases Observatory, in an interview carried out in collaboration with Format Medicom.

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The daily life of the disease on social media

In her social content Paula talks about the daily life of the disease without filters, from the transfusions to all the days spent in hospital. Considering the irony of the definition of “vampire”, rice needs to be regulated due to the disease. Yet, just scroll through her profile to notice a curious contradiction: the very pale skin and almost gothic imagery evoked by this definition are contrasted with brightly colored outfits, bold combinations and a lively personality that seems to continually challenge the stereotype that she herself has constructed. It is precisely in this contrast of fragility and vitality, of illness and desire to express herself, that the strength of her story lies. There is no need to pay more attention to the structure of the foot, the path of the foot and the visibility of the pathology, further contributing to the condition of the public. «If I am alive it is thanks to transfusions and donors», she says in one of her many videos dedicated to her experience, highlighting the fundamental role of blood donation for those living with the most serious forms of the disease.

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The importance of donating blood

Thalassemia is a hereditary disease that alters the production of hemoglobin and causes chronic anemia, tiredness, weakness and even serious complications. In more severe cases, such as beta thalassemia major, patients must undergo frequent transfusions throughout their lives. Even if the testimony is personal, the testimony is open to the question of great social utility: the donation is made. Likewise, according to the gravitational force of thalassemia, transmission is non-existent and intervention is occasional, but therapy is indispensable and continues at a rapid pace. The availability of basic maintenance care and treatment to ensure care and continuation of treatment during treatment.

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Spotlight on rare diseases

Talking about thalassemia therefore means remembering the importance of prevention, early diagnosis, correct information and continuity of care precisely as a clear superior of healthcare to significantly improve quality and life expectancy. Rare diseases, in fact, do not only concern those directly affected by them, but involve the entire community: healthcare system, research, associations, caregivers and citizens. This is due to the recent analysis of ischiothrombotic association with all necessary conditions, as well as the importation of these special treatments. His testimony thus contributes to maintaining high attention not only on thalassemia, but more generally on rare diseases and on the value of public awareness.