Paula Desianu and thalassemia: “My blood transfusions are not in my life”

Paula Dasianu, meet her socially at @pappudash

The rare malattie restano ancora oggi little conosciute dal grande pubblico, nonostante il loro impacto sulla vita de milioni di personae e delle loro famiglie. For this reason, I assume a particular value in the testimony of the sceglie of transforming one’s own personal experience into an instrument of information and sensitivity. In the case of Paula Dasianu, a content creator who knows her social skills as well as @pappudashThe last few years have decided to properly deal with living with beta thalassemia major, a serious genetic blood disorder that requires periodic transfusions and continuous monitoring. E di malattie rare, dell’importanza di accendere i riflettori su queste pathologie e del bisogno di una corretta informazione per pazienti e caregiver parla also Francesco Macchia, president di Osservatorio Malattie rare, in an interview conducted in collaboration with Format Medicom.

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Sui social la quotidianità della malattia

Nei suoi contenuti social Paula racconta senza filtri la quotidianità della malattia, dalle transfusioni alle giornate trascorse in ospedale. With his easy irony he loves to define a “vampire”, a reference to the need to regularly bleed due to malattia. Eppure, just scorrere il suo profilo per accorgersi di un curious contraddizione: alla pelle chiarissima e all’immaginario quasi gotico evocato da este definizione si contrappongono outfit dai colori accesi, abbinamenti audaci e una personalità vivace che sembra sfidare continually lo stereotype che lei stessa has costruito. È forse proper in this contrast between fragility and vitality, between malattia and desiderio di primere se thesesa, che risiede la forza del suo racconto. Nei suoi contenuti show spesso le giornate trascorse in ospedale, le transfusioni e gli aspetti meno visibili della pathologia, contributing to far conoscere a condition ancora little noticed by the large public. “He was alive thanks to all the transfusions and donors”, narrated in one of his many videos dedicated to his experience, evidencing the fundamental path of the blood donation in which he lives with the most serious form of the disease.

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The importance of donating blood

Thalassemia is an ereditarian malattia that alters the production of hemoglobin and can cause chronic anemia, stagnation, depression and significant additional complications. Nei almost serious, like beta thalassemia major, and peace is due to frequent transfusions throughout life. When it comes to personal testimony, the issue arises from attention to a question of great social utility: blood donation. Because he lives with a serious form of thalassemia, the transfusion does not involve an occasional intervention, but a life-saving therapy that is indispensable and continuous over time. The availability of safe blood and the presence of donors are essential to guarantee healing and therapeutic continuity in peace.

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Riflettori accessi sulle malattie rare

Parlare di thalassemia means also remember the importance of prevention, early diagnosis, correct information and continuità healthcare as evidence from the Istituto superiore di sanità per migliorare in moda significant qualità e aspettativa di vita. The malattie rare, infatti, non riguardano solo chi ne è directly colpito, ma coinvolgono l’intera comunità: healthcare system, ricerca, associazioni, caregivers and cittadini. Dasianu has also recently spoken about the risk of thrombosis associated with his condition, outlining the importance of carefully following the therapeutic path indicated by specialists. His testimony contributes to keeping high attention not only on thalassemia, but in general on rare bad conditions and on the value of public sensitivity.