Spitalul Clinic C.F. Timi\u0219oara deruleaz\u0103, \u00een premier\u0103, un program na\u021bional dedicat pacien\u021bilor diagnostica\u021bi cu hemoglobinurie paroxistic\u0103 nocturn\u0103 (HPN), o boal\u0103 rar\u0103 \u0219i sever\u0103. Unitatea sanitar\u0103 devine astfel unul dintre pu\u021binele centre din \u021bar\u0103 implicate \u00een Programul Na\u021bional de Tratament pentru Boli Rare, oferind pacien\u021bilor \u0219ansa unui diagnostic precoce \u0219i a accesului rapid la tratament specific.<\/p>\n
Ce este hemoglobinuria paroxistic\u0103 nocturn\u0103?<\/h3>\n
Hemoglobinuria paroxistic\u0103 nocturn\u0103 face parte din categoria bolilor rare \u0219i se caracterizeaz\u0103 prin distrugerea accelerat\u0103 a globulelor ro\u0219ii (hemoliz\u0103). Afec\u021biunea este frecvent asociat\u0103 cu tromboze \u0219i insuficien\u021b\u0103 medular\u0103 (afectarea m\u0103duvei osoase), av\u00e2nd un poten\u021bial risc vital.<\/p>\n
\u00cen Rom\u00e2nia, boala este subdiagnosticat\u0103 din cauza inciden\u021bei sale reduse \u0219i a simptomelor nespecifice. De multe ori, HPN este depistat\u0103 tardiv, \u00een momentul \u00een care posibilit\u0103\u021bile de interven\u021bie \u0219i tratament sunt limitate.<\/p>\n
\u201eHPN are simptome nespecifice. Vorbim despre anemii f\u0103r\u0103 o cauz\u0103 evident\u0103 \u0219i despre episoade trombotice neobi\u0219nuite. Practic, avem parametri hematologici care ies din limite: hemoglobin\u0103 sc\u0103zut\u0103, modificarea valorii trombocitelor, leucocite sc\u0103zute, un deficit major de fier \u2013 respectiv feritin\u0103 seric\u0103 sc\u0103zut\u0103 \u2013, anemie hemolitic\u0103 \u0219i tromboze ap\u0103rute la v\u00e2rste sub 45 de ani, \u00een teritorii neobi\u0219nuite, cum ar fi venele abdominale sau cerebrale, precum \u0219i afectarea m\u0103duvei osoase. De aceea, consider\u0103m HPN ca fiind o boal\u0103 cu risc vital\u201d, explic\u0103 dr. Aura Ioana Hanci, medic specialist hematologie \u00een cadrul Spitalului Clinic C.F. Timi\u0219oara.<\/p>\n
Pe l\u00e2ng\u0103 aceste manifest\u0103ri, pot ap\u0103rea oboseal\u0103 constant\u0103, tahicardie, dispnee, dureri abdominale, spasme esofagiene \u0219i hemoglobinurie (urin\u0103 \u00eenchis\u0103 la culoare, mai ales diminea\u021ba).<\/p>\n
Program na\u021bional de depistare, disponibil la Timi\u0219oara<\/h3>\n
\u00cencep\u00e2nd din aceast\u0103 lun\u0103, la Spitalul Clinic C.F. Timi\u0219oara va fi implementat Programul Na\u021bional de depistare a persoanelor cu hemoglobinurie paroxistic\u0103 nocturn\u0103.<\/p>\n
\u201eSuntem printre pu\u021binele unit\u0103\u021bi sanitare din \u021bar\u0103 \u00een care se deruleaz\u0103 un asemenea program, inclus \u00een Programul Na\u021bional de Tratament pentru Boli Rare. Recunoa\u0219terea precoce a afec\u021biunii \u0219i accesul rapid la tratament specific sunt extrem de importante. \u00cen lipsa acestora, prognosticul este rezervat. \u00cen perioada urm\u0103toare, avem \u00een vedere \u0219i alte programe na\u021bionale pe care s\u0103 le implement\u0103m \u00een cadrul unit\u0103\u021bii sanitare\u201d, declar\u0103 dr. Cosmin Gridan, managerul Spitalului Clinic C.F. Timi\u0219oara.<\/p>\n
Programul presupune identificarea pacien\u021bilor pe baza unui profil specific \u0219i testarea acestora. Probele recoltate sunt trimise c\u0103tre unit\u0103\u021bi sanitare specializate \u00een stabilirea diagnosticului, unde se utilizeaz\u0103 citometria \u00een flux \u2013 o tehnic\u0103 specific\u0103 ce eviden\u021biaz\u0103 absen\u021ba unor proteine de pe suprafa\u021ba celulelor sanguine, element definitoriu pentru diagnosticarea HPN.<\/p>\n
\u00cen cadrul Spitalului Clinic C.F. Timi\u0219oara func\u021bioneaz\u0103 un Cabinet de Hematologie, iar consultul este gratuit \u00een baza unei trimiteri de la medicul de familie.<\/p>\n<\/div>\n
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