{"id":49979,"date":"2022-12-20T12:44:34","date_gmt":"2022-12-20T10:44:34","guid":{"rendered":"https:\/\/buletin.de\/bucuresti\/?p=49979"},"modified":"2022-12-20T12:57:03","modified_gmt":"2022-12-20T10:57:03","slug":"nicoleta-vaia-bucuresteanca-cu-boala-rara-care-salveaza-an-de-an-viata-a-zeci-de-oameni-in-lipsa-ajutorului-de-la-stat","status":"publish","type":"post","link":"https:\/\/buletin.de\/bucuresti\/nicoleta-vaia-bucuresteanca-cu-boala-rara-care-salveaza-an-de-an-viata-a-zeci-de-oameni-in-lipsa-ajutorului-de-la-stat\/","title":{"rendered":"Nicoleta Vaia, bucure\u0219teanca cu boal\u0103 rar\u0103 care salveaz\u0103 an de an via\u021ba a zeci de oameni \u00een lipsa ajutorului de la stat"},"content":{"rendered":"\n<p><strong>Sunt 182 de bolnavi de mastocitoz\u0103 \u00een Rom\u00e2nia, o form\u0103 de cancer, inclus\u0103 pe lista bolilor rare. Au \u00eenv\u0103\u021bat s\u0103 aib\u0103 grij\u0103 unii de al\u021bii, \u00een lipsa unui ajutor complet de la statul rom\u00e2n. \u00cen Rom\u00e2nia, prea pu\u021bini au fost diagnostica\u021bi cu mastocitoz\u0103 din lips\u0103 de speciali\u0219ti, a\u0219a c\u0103 nevoile i-au \u00eempins s\u0103 \u00eenve\u021be s\u0103 aib\u0103 grij\u0103 unii de al\u021bii.&nbsp;<\/strong><\/p>\n\n\n\n<p>Nicholas a \u00eemplinit de cur\u00e2nd 5 ani. Se lupt\u0103 cu boala de la \u0219ase luni. Ca s\u0103 g\u0103seasc\u0103 un diagnostic clar, mama lui a umblat la doctori luni \u00eentregi. Primele semne i-au ap\u0103rut dup\u0103 o opera\u021bie de varicocel.&nbsp;<\/p>\n\n\n\n<p><em>\u201eNi\u0219te pete pe spate. Am mers la 6-7 doctori care ne-au dat diagnostice care mai de care mai ur\u00e2te. \u00centr-un final, o doctori\u021b\u0103 la privat mi-a zis c\u0103 este mastocitoz\u0103 \u0219i m-a \u00eendemnat s\u0103 merg la dermatolog. D\u00e2nsa mi-a spus s\u0103 nu citesc nimic despre diagnostic pe internet, ci s\u0103 vorbesc cu Nicoleta Vaia\u201d<\/em>, \u00ee\u0219i aminte\u0219te Maria, mama lui Nicholas, cum a \u00eenceput aventura lor \u00een lupta cu boala.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"467\" height=\"680\" src=\"data:image\/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==\" data-src=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.07-1.jpeg\" alt=\"\" class=\"wp-image-49996 lazyload\" data-sizes=\"auto\" data-srcset=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.07-1.jpeg 467w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.07-1-206x300.jpeg 206w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.07-1-343x500.jpeg 343w\" sizes=\"(max-width: 467px) 100vw, 467px\" \/><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>Nicoleta Vaia este pre\u0219edinta Asocia\u021biei Suport Mastocitoz\u0103 din Rom\u00e2nia. O m\u00e2n\u0103 de om pe care o g\u0103se\u0219ti cu u\u0219urin\u021b\u0103 pe re\u021belele de socializare. Aici \u00eencearc\u0103 s\u0103 conving\u0103 oamenii simpli s\u0103 \u00eei ajute pe bolnavii de mastocitoz\u0103. Nicoleta e \u0219i ea pacient. Avea 22 de ani c\u00e2nd a i-au ap\u0103rut primele semne de boal\u0103. Era 1996 \u0219i a f\u0103cut un \u0219oc anafilactic dup\u0103 ce a fost anesteziat\u0103 pentru o opera\u021bie la dantur\u0103. \u00cen urm\u0103torii 12 ani, \u0219ocurile anafilactice au urmat unul dup\u0103 altul. <\/p>\n\n\n\n<p><em>\u201eAveam pustule s\u00e2ngerande pe piept \u0219i \u00een zona lombar\u0103, erup\u021bii care \u021bineau de ani de zile\u201d<\/em>, \u00ee\u0219i aminte\u0219te femeia. A luat-o din doctor \u00een doctor \u0219i a ajuns inclusiv la psihiatru c\u0103 s-a g\u00e2ndit c\u0103 somatizeaz\u0103, dar medicii i-au spus c\u0103 are un psihic de fier. <em>\u201eSunte\u021bi un Supravie\u021buitor.\u201d<\/em> Dup\u0103 toate standardele, a\u0219a era. Se n\u0103scuse la 26 de s\u0103pt\u0103m\u00e2ni \u0219i avea, la na\u0219tere, 900 de grame. P\u00e2n\u0103 \u00een 1995, luase cromoglicat &#8211; un medicament care o ajuta f\u0103r\u0103 s\u0103 \u0219tie &#8211; care era recomandat fo\u0219tilor prematuri de grad mare. Apoi, medicamentul fusese scos de pe lista celor oferite gratuit de c\u0103tre stat, pentru c\u0103 era prea ieftin. A fost momentul c\u00e2nd au \u00eenceput \u0219i problemele ei. <\/p>\n\n\n\n<p>\u00cen 2007, a f\u0103cut facut apendicectomie. Dup\u0103 12 ore de mers cu ma\u0219ina, a ajuns la Spitalul Universitar din Bucure\u0219ti \u0219i a intrat urgent \u00een opera\u021bie. \u0218i \u00een moarte clinic\u0103. Inima i s-a oprit din cauza anestezicului. Medicii au reu\u0219it s\u0103 o resusciteze. Devenise clar c\u0103 boala ei nu avea leg\u0103tur\u0103 cu psihicul. Ca s\u0103 fie sigur\u0103 c\u0103 anestezia era problema, a mai \u00eencercat una, dar reac\u021bia a fost una alergic\u0103 sever\u0103.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"675\" height=\"900\" src=\"data:image\/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==\" data-src=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-675x900.jpeg\" alt=\"\" class=\"wp-image-49981 lazyload\" data-sizes=\"auto\" data-srcset=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-675x900.jpeg 675w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-225x300.jpeg 225w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-550x733.jpeg 550w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-375x500.jpeg 375w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53-600x800.jpeg 600w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.53.jpeg 720w\" sizes=\"(max-width: 675px) 100vw, 675px\" \/><figcaption>Nicoleta este o \u00eenfocat\u0103 montaniard\u0103 \u0219i \u00eencearc\u0103 mereu s\u0103 aib\u0103 o via\u021b\u0103 normal\u0103. <\/figcaption><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>Un an mai t\u00e2rziu, \u00een 2008, concomitent, doi medici &#8211;&nbsp; Horia Bumbea de la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti \u0219i Irina Bucur de la Spitalul Nicolae Malaxa i-au dat vestea. Avea mastocitoz\u0103, un cancer extrem de rar. A\u0219a \u00eencepea povestea ei \u0219i a celor peste 100 de bolnavi.&nbsp;<\/p>\n\n\n\n<p class=\"has-background\" style=\"background-color:#fcf4de\"><strong>Mastocitozele reprezint\u0103 un grup heterogen de boli caracterizate prin prezen\u021ba de mastocite (celule implicate \u00een func\u021bionarea sistemului imun care se g\u0103sesc, \u00een mod normal, \u00een mucoase \u0219i \u021besutul conjunctiv) \u00een diferite organe sau \u021besuturi precum pielea, m\u0103duva osoas\u0103, tubul digestiv, oasele. Mastocitele se pot dezvolta \u00een toate organele cu excep\u021bia sistemului nervos central \u0219i al retinei. Fiind o boal\u0103 rar\u0103, este dificil ca medicii s\u0103 aib\u0103 experien\u021ba necesar\u0103 pentru a realiza un diagnostic \u0219i tratament adecvat.&nbsp;<\/strong><\/p>\n\n\n\n<p>\u201e<em>Prima reac\u021bie, \u021bin minte ca acum. Era noiembrie, ploua, ploaie mocaneasca. Mi-am ridicat ochii spre cer \u0219i am zis: Doamne, ajut\u0103-m\u0103, s\u0103-i str\u00e2ng pe to\u021bi cei cu boala mea, ca nimeni s\u0103 nu mai treac\u0103 prin 12 ani de chin pentru a primi diagnosticul si tratamentul corect \u0219i s\u0103 fac un centru cu o re\u021bea de medici care s\u0103 \u0219tie boala asta!\u201d<\/em>, \u00ee\u0219i aminte\u0219te Nicoleta \u0219ocul afl\u0103rii ve\u0219tii.&nbsp;<\/p>\n\n\n\n<p>Pe urm\u0103, c\u00e2nd a realizat c\u00e2t de grav\u0103 este boala ei \u0219i cum va ar\u0103ta via\u021ba ei de atunci \u00eenainte, a vrut s\u0103 divor\u021beze, \u201eca s\u0103 nu fiu povara nim\u0103nui\u201d.<\/p>\n\n\n\n<p><em>\u201e\u021ain minte cum so\u021bul se ruga de tata, Dumnezeu s\u0103-l ierte, \u0219i-i zicea s\u0103 m\u0103 \u00eenduplece, c\u0103 el nici mort nu vrea sa divorteze, \u0219i tata \u00eei spunea glumind: nu \u0219tiu taic\u0103, acum vezi c\u00e2t de greu mi-a fost \u0219i mie 28 de ani cu ea?\u201d<\/em><\/p>\n\n\n\n<p>Au r\u0103mas \u00eempreun\u0103 s\u0103-i fie de ajutor \u0219i c\u00e2\u021biva ani mai t\u00e2rziu au devenit p\u0103rin\u021bii unui copil.&nbsp;<\/p>\n\n\n\n<p>Un \u0219oc a fost \u0219i pentru mama lui Nicholas. Nu \u00een\u021belegea de ce tocmai ei trebuia s\u0103 i se \u00eent\u00e2mple asta, cu ce gre\u0219ise, ce ar fi trebui s\u0103 fac\u0103 pentru copilul ei. Cel mai greu i-a fost la prima degranulare c\u00e2nd, pus\u0103 \u00een fa\u021ba reac\u021biei organismului copilului nu \u0219tia ce s\u0103 fac\u0103.&nbsp;<\/p>\n\n\n\n<p><em>\u201e\u0218tiam despre ce e vorba c\u0103 m\u0103 documentasem deja, dar tot nu e ok s\u0103 vezi cum \u021bi se umfl\u0103 copilul, c\u0103 are foarte multe pete pe corp \u0219i se umfl\u0103 a\u0219a, se fac ro\u0219ii \u0219i pline de ap\u0103. \u0218i zici c\u0103 e carne vie. \u0218i \u00eel vezi cum respir\u0103\u201d<\/em>, \u00ee\u0219i aminte\u0219te mama lui Nicholas primul \u0219oc.&nbsp;<\/p>\n\n\n\n<p>Pentru c\u0103 fusese pus\u0103 deja \u00een tem\u0103, ea nu a sunat la Salvare, ci la Nicoleta care a ajutat-o s\u0103 treac\u0103 peste moment. Ca Nicholas, \u00een Rom\u00e2na mai sunt 67 de copii cu boli mastocitare, aprape jum\u0103tate din num\u0103rul total de pacien\u021bi diagnostica\u021bi. Nicholas, ca \u0219i Nicoleta, tr\u0103ie\u0219te \u00een apropierea Capitalei. Cu c\u00e2t te \u00eendep\u0103rtezi de Bucure\u0219ti, cu at\u00e2t \u0219ansele s\u0103 fii diagnosticat cu boala scad. Din 42 de jude\u021be, cazuri au fost \u00eenregistrate doar \u00een 17. Ca s\u0103 prime\u0219ti un diagnostic corect trebuie s\u0103 ajungi la Bucure\u0219ti sau \u00eentr-un ora\u0219 mare. De ce se \u00eent\u00e2mpl\u0103 asta, ne explic\u0103 prof. Horia Bumbea, profesor la Facultatea de Medicin\u0103 \u0219i Farmacie din Bucure\u0219ti.&nbsp;<\/p>\n\n\n\n<div class=\"infogram-embed\" data-id=\"_\/5TwCAttIqeQfvocFSJLZ\" data-type=\"interactive\" data-title=\"reparti\u021bie mastocitoz\u0103\"><\/div><script>!function(e,i,n,s){var t=\"InfogramEmbeds\",d=e.getElementsByTagName(\"script\")[0];if(window[t]&&window[t].initialized)window[t].process&&window[t].process();else if(!e.getElementById(n)){var o=e.createElement(\"script\");o.async=1,o.id=n,o.src=\"https:\/\/e.infogram.com\/js\/dist\/embed-loader-min.js\",d.parentNode.insertBefore(o,d)}}(document,0,\"infogram-async\");<\/script>\n\n\n\n<p><em>\u201dDe cam 182 de pacien\u021bi \u0219tim noi p\u00e2n\u0103 acum. Consider\u0103m c\u0103 este o boal\u0103 subdiagnosticat\u0103 fa\u021b\u0103 de anumite registre (criterii de diagnosticare-n.r.) mai evoluate din alte \u021b\u0103ri. Credem c\u0103 inciden\u021ba este ceva mai mare. Era un registru danez pe care \u00eel luasem noi \u00een calcul. Fiind o boal\u0103 rar\u0103, e evident c\u0103 exist\u0103 diferen\u021be fa\u021b\u0103 de anumite zone. Ceea ce conteaz\u0103 este puterea de diagnostic din zona respectiv\u0103, adic\u0103 s\u0103 ai capacitatea de a te g\u00e2ndi la boala respectiv\u0103, s\u0103 faci un diagnostic diferen\u021biat. De exemplu, la noi, talasemia minor\u0103 este destul de frecvent\u0103 \u00een Rom\u00e2nia, noi ne g\u00e2ndim destul de mult la ea, fa\u021b\u0103 de Suedia sau Norvegia unde nu prea fac asta\u201d<\/em>, explic\u0103 profesorul Horia Bumbea.&nbsp;<\/p>\n\n\n\n<div class=\"infogram-embed\" data-id=\"_\/ShnZeoZ85joQyPEvWZRF\" data-type=\"interactive\" data-title=\"Untitled infographic\"><\/div><script>!function(e,i,n,s){var t=\"InfogramEmbeds\",d=e.getElementsByTagName(\"script\")[0];if(window[t]&&window[t].initialized)window[t].process&&window[t].process();else if(!e.getElementById(n)){var o=e.createElement(\"script\");o.async=1,o.id=n,o.src=\"https:\/\/e.infogram.com\/js\/dist\/embed-loader-min.js\",d.parentNode.insertBefore(o,d)}}(document,0,\"infogram-async\");<\/script>\n\n\n\n<p>Nicholas nu a ajuns la spital la primul \u0219oc, dar a ajuns de alte c\u00e2teva ori, pentru c\u0103 reac\u021biile lui apar pe c\u0103ile respiratorii. Face bron\u0219iolite de ajunge la insuficien\u021b\u0103 respiratorie, a\u0219a c\u0103 medicii \u0219tiu deja cum s\u0103 \u00eel primeasc\u0103 atunci c\u00e2nd are probleme. Dar, doar unii medici.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"472\" height=\"349\" src=\"data:image\/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==\" data-src=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.19-1.jpeg\" alt=\"\" class=\"wp-image-49998 lazyload\" data-sizes=\"auto\" data-srcset=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.19-1.jpeg 472w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.05.19-1-300x222.jpeg 300w\" sizes=\"(max-width: 472px) 100vw, 472px\" \/><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>\u00centr-o var\u0103, a avut insuficien\u021b\u0103 respiratorie, la mare, unde era \u00een vacan\u021b\u0103 cu p\u0103rin\u021bii. Pentru c\u0103 spitalul din apropiere nu era preg\u0103tit s\u0103 aib\u0103 grij\u0103 de el, p\u0103rin\u021bii l-au pus \u00een ma\u0219in\u0103 \u0219i au alergat sute de kilometri p\u00e2n\u0103 la spitalul preg\u0103tit. Au f\u0103cut un drum de 3 ore \u00eentr-o or\u0103 \u0219i jum\u0103tate.&nbsp;<\/p>\n\n\n\n<p>\u00cen lipsa speciali\u0219tilor, Nicoleta este omul cu cea mai mare experien\u021b\u0103 din comunitate. Pe l\u00e2ng\u0103 diagnosticul de mastocitoz\u0103, a mai aflat c\u0103 are trei muta\u021bii din patru pe cromozomul 7 privind producerea de diaminooxidaz\u0103 (DAO).<\/p>\n\n\n\n<p class=\"has-background\" style=\"background-color:#fcf4de\"><strong>Diaminooxidaza (DAO) este o enzim\u0103 care metabolizeaz\u0103 histamina, ac\u0163iunea sa manifest\u00e2ndu-se \u00een principal la nivel intestinal. Histamina este un mediator chimic, principalele sale activit\u0103\u0163i fiziologice fiind vasodilata\u0163ia capilar\u0103, contrac\u0163ia musculaturii netede \u015fi cre\u015fterea secre\u0163iei gastrice. Este un important neurotransmi\u0163\u0103tor cerebral \u015fi principalul mediator al fazei precoce a hipersensibilit\u0103\u0163ii imediate.<\/strong><\/p>\n\n\n\n<p>Practic, organismul ei producea maximum 25% din cantitatea de DAO necesar\u0103. Vestea a picat ca un tr\u0103snet pentru c\u0103 a venit cu interdic\u021bia de a avea acces la 99% dintre medicamente \u0219i 95% din alimente care erau otrav\u0103 pur\u0103 pentru organismul ei.&nbsp;<\/p>\n\n\n\n<p>Muta\u021biile fac ca mastocitele, prin procesul care medical se cheam\u0103 degranulare, s\u0103 elibereze 80 de substan\u021be (mediatori) printre care \u0219i histamina, heparina sau serotonina.&nbsp;<\/p>\n\n\n\n<p>Fiecare dintre aceste substan\u021be au anumite efecte asupra organismului. Histamina produce bronhospasm, \u0219oc anafilactic, inflama\u021bii, dureri \u0219i duce le epuizarea diaminooxidazei. Heparina duce la apari\u021bia v\u00e2n\u0103t\u0103ilor, iar seroronina produce sindromul serotoninergic, al fericirii, care poate fi \u00eens\u0103 letal.&nbsp;<\/p>\n\n\n\n<p><em>&nbsp;\u201e\u00censuma\u021bi, doar ace\u0219ti trei mediatori dau urm\u0103toarele simptome \u00een timp ce e\u0219ti \u00een UPU: \u0219oc anafilactic, bronhospasm, edem generalizat, prurit generalizat \u0219i hipertensiune arterial\u0103. Aici sunt unic\u0103 \u00eentre toate patologiile de pe p\u0103m\u00e2nt. \u00cen plus, agitatie, euforie, transpiratii, bradicardie si tahicardie. Este un amestec oribil, \u00een care ai nevoie de o re\u021bea super specializata de doctori, pentru ca foarte multe te pot ucide.\u201c<\/em><\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Ce era de f\u0103cut?&nbsp;<\/strong><\/h2>\n\n\n\n<p>Era anul 2021 c\u00e2nd a aflat asta, la 13 ani de la primul diagnostic. A \u00eencercat s\u0103 g\u0103seasc\u0103 r\u0103spunsul la problema ei \u0219i a mers din medic \u00een medic. A ajuns la Centrul European de Excelen\u021b\u0103 \u00een Mastocitoza, filiala din Rom\u00e2nia, \u0219i la celebrul spital Charite din Berlin. A aflat c\u0103 dieta cu histamina este singura care poate cre\u0219te nivelul de diaminooxidaz\u0103 prin stimulare.&nbsp;<\/p>\n\n\n\n<p><em>\u201eRuleta ruseasc\u0103. Mi-am amintit de regii bizantini c\u0103rora li se d\u0103deau zilnic cantit\u0103\u021bi infime de otrav\u0103 pentru a supravie\u021bui unei otr\u0103viri cand se vor urca pe tron. Principiul era acela\u0219i \u0219i \u0219tiam c\u0103, dac\u0103 reu\u0219esc s\u0103 \u00eemi cresc nivelul de diaminooxidaz\u0103 , voi schimba via\u021ba multor bolnavi, mai ales copii cu nivel mic, diagnostica\u021bi gre\u0219it drept intoleran\u021b\u0103 la histamina \u0219i a bolnavilor de mastocitoza\u201d<\/em>, poveste\u0219te Nicoleta.&nbsp;<\/p>\n\n\n\n<p>\u0218i-a stabilit cantitatea la limita toleran\u021bei, dar a zis c\u0103 alt\u0103 \u0219ans\u0103 nu are dec\u00e2t s\u0103 \u00eencerce.&nbsp;<\/p>\n\n\n\n<p><em>\u201eE o senzatie ciudata s\u0103 \u0219tii c\u0103 poti muri dac\u0103 nu vine ambulan\u021ba, dar c\u0103 doar m\u00e2ncand a\u0219a po\u021bi trai \u0219i \u00eei po\u021bi ajuta \u0219i pe al\u021bii.\u201d<\/em><\/p>\n\n\n\n<p>Experien\u021ba a dat \u00eens\u0103 roade. De la nivelul 2 de diaminooxidaz\u0103, minimum pe care \u00eel ar\u0103ta aparatul, a ajuns la 9. A repetat experien\u021ba de fiecare dat\u0103 c\u00e2nd nivelul a sc\u0103zut iar. Un nivel normal de diaminooxidaz\u0103 este situat \u00eentre 14 \u0219i 35.&nbsp;<\/p>\n\n\n\n<p><em>\u201eC\u00e2nd mananc cu histamina durerile sunt infernale, practic imi creste osul, se dubleaza maleola (Fiecare dintre proeminen\u0163ele situate \u00een partea inferioar\u0103 a tibiei \u015fi a peroneului &#8211; n.r.), dar, privind \u00een urma concluzia mea este c\u0103 am reu\u0219it s\u0103 ies, de fiecare dat\u0103, la liman, c\u0103 am reu\u0219it sa traiesc. \u0218i nu oricum, ci cu bucurie, ca de fiecare dat\u0103 au fost solu\u021bii \u0219i asta este cel mai important lucru\u201d<\/em>, explic\u0103 Nicoleta<\/p>\n\n\n\n<p><em>\u201eCa \u0219i cum \u021bi-ar scoate cineva o m\u0103sea pe viu. Dup\u0103 dou\u0103 ore de chin, reu\u0219esc s\u0103 mai adorm o or\u0103 \u0219i un pic.\u201d<\/em><\/p>\n\n\n\n<p>C\u00e2nd se treze\u0219te, vomit\u0103 instant de la pasta de din\u021bi. Ziua \u00eencepe cu o cafea f\u0103r\u0103 zah\u0103r \u0219i 20 din cele 40 de pastile pe care le ia zilnic.&nbsp;<\/p>\n\n\n\n<p><em>\u201e\u00cenchid ochii \u0219i le inghit \u0219i asta e. Ore \u00eentregi nu mai pot manca nimic. \u00cemi pregatesc copilul pentru scoala \u0219i plec la job doar cu ma\u0219ina. Orice parfum, miros sau persoan\u0103 virusat\u0103 pentru mine pot \u00eensemna UPU \u0219i oxigen.\u201d<\/em><\/p>\n\n\n\n<p>Via\u021ba Nicoletei depinde exclusiv de ceilal\u021bi, de modul \u00een care empatia, educa\u021bia \u0219i bunul simt func\u021bioneaz\u0103 sau nu, dar nu vrea s\u0103 se bazeze pe asta mai ales c\u00e2nd iese \u00een lume. Un drum cu mijloacele de transport, \u00eei poate cauza grave probleme.&nbsp;<\/p>\n\n\n\n<p>Pana la ora 13 nu m\u0103n\u00e2nc\u0103 nimic, sc\u0103derea glicemiei e cea care \u00eei d\u0103 semnalul c\u0103 trebuie totu\u0219i s\u0103 se hr\u0103neasc\u0103. M\u0103n\u00e2nc\u0103 150- 200 de grame de carne, \u00een special porc. Uneori cu pu\u021bin\u0103 salat\u0103.&nbsp;<\/p>\n\n\n\n<p><em>\u201eDupa festin urmeaz\u0103 chin, cam dou\u0103 ore de dureri mari, \u00een care m\u0103 ab\u021bin cu greu sa nu vomit.\u201d<\/em> Durerea ei nu se vede la job. Lucreaz\u0103 la Ministerul de Finan\u021be din Rom\u00e2nia \u0219i, de ceva vreme, este bursier\u0103 a statului german. Acum e la a patra burs\u0103, de la Ministerul de Externe, la Institutul Goethe Brussel care vizeaz\u0103 implementarea germanei ca limba de procedur\u0103 \u00een Uniunea European\u0103.<\/p>\n\n\n\n<p>Acas\u0103 e mam\u0103 eroin\u0103. De 12 ani este mama lui Ianu, un copil special \u0219i el, n\u0103scut prematur care are nevoie de diete speciale.&nbsp;<\/p>\n\n\n\n<p><em>\u201eCopilul meu este unul special, membru MENSA, un copil cu lumea lui, de o bun\u0103tate incredibil\u0103 \u0219i cu alt mod de a vedea lumea, pentru a c\u0103rui via\u021ba lupt\u0103m de 12 ani\u201d<\/em>, explic\u0103 Nicoleta.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"640\" height=\"480\" src=\"data:image\/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==\" data-src=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.55.jpeg\" alt=\"\" class=\"wp-image-49983 lazyload\" data-sizes=\"auto\" data-srcset=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.55.jpeg 640w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.55-300x225.jpeg 300w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.55-550x413.jpeg 550w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.55-600x450.jpeg 600w\" sizes=\"(max-width: 640px) 100vw, 640px\" \/><figcaption>Nicoleta \u0219i Ianu, \u0219i el copil prematur, \u00een primele zile dup\u0103 na\u0219tere. <\/figcaption><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>Seara t\u00e2rziu mai manac\u0103 tot 200 de grame de mancare &#8211; carne, salat\u0103 sau cartofi.<\/p>\n\n\n\n<p>De ceilal\u021bi depinde \u0219i via\u021ba lui Nicholas. Mama lui a decis s\u0103 \u00eel duc\u0103 \u00een colectivitate \u0219i asta implic\u0103 responsabilit\u0103\u021bi suplimentare pe care nu toat\u0103 lumea \u0219i le asum\u0103. De fiecare dat\u0103 c\u00e2nd e la gr\u0103dini\u021b\u0103 \u0219i cere acas\u0103 sau spune c\u0103 nu se simte bine, educatoarele lui Nicholas sun\u0103 s\u0103 fie luat acas\u0103. \u0218i mersul \u00een parc poate fi o problem\u0103 pentru c\u0103 orice conflict cu copiii poate duce la degranulare. Cu toate astea, nimeni nu renun\u021b\u0103, pentru c\u0103, dac\u0103 \u0219tii ce ai de f\u0103cut \u0219i o variant\u0103 medie a bolii, po\u021bi avea o speran\u021b\u0103 de via\u021b\u0103 similar\u0103 cu a oamenilor f\u0103r\u0103 boli rare.&nbsp;<\/p>\n\n\n\n<p>Speran\u021ba de via\u021b\u0103 scade pentru 10% dintre cei care sufer\u0103 de o form\u0103 grav\u0103 care le afecteaz\u0103 \u0219i alte organe vitale.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Asocia\u021bia Mastocitoz\u0103, speran\u021ba pentru o via\u021b\u0103 mai bun\u0103<\/strong><\/h2>\n\n\n\n<p>Lupta Nicoletei cu sistemul a \u00eenceput \u00een 2008, \u00een momentul diagnostic\u0103rii, dup\u0103 ce i-a fost prescris cromoglicat. \u00cencepuse s\u0103 \u00eel foloseasc\u0103 \u0219i reac\u021bia organismului era foarte bun\u0103. Era prescris \u00een mastocitoz\u0103 din 1980, dar \u00een Rom\u00e2nia nu era pe lista medicamentelor decontate de Casa Na\u021bional\u0103 de Asigur\u0103ri de S\u0103n\u0103tate a\u0219a c\u0103 nu mai exista la liber. Aprobarea lui pentru uzul curent era o procedura complicat\u0103 pe care nimeni nu \u0219i-o asuma.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"720\" height=\"535\" src=\"data:image\/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==\" data-src=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54.jpeg\" alt=\"\" class=\"wp-image-49984 lazyload\" data-sizes=\"auto\" data-srcset=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54.jpeg 720w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54-300x223.jpeg 300w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54-550x409.jpeg 550w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54-673x500.jpeg 673w, https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/WhatsApp-Image-2022-12-20-at-12.04.54-600x446.jpeg 600w\" sizes=\"(max-width: 720px) 100vw, 720px\" \/><figcaption>Produsele cu cromoglicat pe care Asocia\u021bia de Suport Mastocitoz\u0103 le cump\u0103r\u0103 lun\u0103 de lun\u0103. <\/figcaption><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p><em>\u201dCromoglicatul este ieftin, dar sunt medicamente pentru alte boli grave foarte scumpe \u0219i, dac\u0103 ne-ar fi aprobat nou\u0103, ar fi deschis o cutie a Pandorei \u0219i trebuiau aprobate \u0219i pentru alte boli unde costurile ar fi foarte mari\u201d,<\/em> explic\u0103 femeia.&nbsp;<\/p>\n\n\n\n<p>Cromoglicatul stabilizeaz\u0103 mastocitele purt\u0103toare ale informa\u021biei oncologice \u0219i \u00eei ajut\u0103 pe pacien\u021bi s\u0103 aib\u0103 o via\u021b\u0103 c\u00e2t mai aproape de normalitate, adic\u0103 s\u0103 nu mai degranuleze &#8211; s\u0103 nu mai intre \u00een \u0219oc anafilactic dac\u0103 e frig, cald, dac\u0103 se lovesc sau dac\u0103 m\u0103n\u00e2nc\u0103 cu E-uri. \u00cen cazul copiilor, pustulele nu mai s\u0103ngereaz\u0103.&nbsp;<\/p>\n\n\n\n<p>Rom\u00e2nia este singura \u021bara din UE \u0219i printre pu\u021binele din lume care nu are legisla\u021bia&nbsp; privind administrarea \u0219i decontarea medicamentelor \u00een afara indicatiilor de pe prospect. \u00cen lipsa ajutorului de la stat, Nicoleta se descurc\u0103 cum poate. Pentru ea \u0219i restul de 183 de bolnavi de mastocitoz\u0103 face rost de bani pentru crema cu cromoglicat o dat\u0103 la c\u00e2teva luni. Cum ajutorul trebuie s\u0103 fie constant, iar resursele de bun\u0103tate limitate, \u00een fiecare iarn\u0103, Nicoleta pune mur\u0103turi, varz\u0103 murat\u0103 sau face m\u00e2ncare tradi\u021bional\u0103 pe care le vinde. Uneori o cuprinde dezam\u0103girea, dar g\u0103se\u0219te de fiecare dat\u0103 puterea s\u0103 mearg\u0103 mai departe. A g\u0103sit o farmacie dispus\u0103 s\u0103 produc\u0103 de fiecare dat\u0103 c\u00e2nd e nevoie s\u0103pun special cu cromoglicat.&nbsp;<\/p>\n\n\n\n<p>Re\u021bet\u0103 pentru cromoglicat ar costa 30.000 euro pe an, o suma infim\u0103, dar asta ar \u00eensemna ca \u00een Ministerul S\u0103n\u0103t\u0103\u021bii Rom\u00e2n s\u0103 existe speciali\u0219ti care pot face asta \u0219i s\u0103 existe voin\u021ba politic\u0103.&nbsp;<\/p>\n\n\n\n<p>P\u00e2n\u0103 atunci, \u0219i \u00een 2022, de Cr\u0103ciun, Nicoleta \u0219i-a luat liber s\u0103 v\u00e2nd\u0103 produsele pe care le-a preg\u0103tit ca s\u0103 mai de speran\u021ba unei vie\u021bi normale pentru 182 de pacien\u021bi diagnostica\u021bi cu mastocitoz\u0103.<\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Sunt 182 de bolnavi de mastocitoz\u0103 \u00een Rom\u00e2nia, o form\u0103 de cancer, inclus\u0103 pe lista bolilor rare. Au \u00eenv\u0103\u021bat s\u0103 aib\u0103 grij\u0103 unii de al\u021bii, \u00een lipsa unui ajutor complet de la statul rom\u00e2n. \u00cen Rom\u00e2nia, prea pu\u021bini au fost diagnostica\u021bi cu mastocitoz\u0103 din lips\u0103 de speciali\u0219ti, a\u0219a c\u0103 nevoile i-au \u00eempins s\u0103 \u00eenve\u021be s\u0103 [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":49993,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"ngg_post_thumbnail":0,"footnotes":""},"categories":[3419],"tags":[3492,2054,4992,4993,4991],"ppma_author":[22584],"class_list":["post-49979","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","tag-autoritati","tag-capitala","tag-mastocitoza","tag-nicholas","tag-nicoleta-vaia"],"acf":[],"a3_pvc":{"activated":false,"total_views":0,"today_views":0},"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.6 (Yoast SEO v27.6) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Nicoleta Vaia, bucure\u0219teanca cu boal\u0103 rar\u0103 care salveaz\u0103 an de an via\u021ba a zeci de oameni \u00een lipsa ajutorului de la stat - Buletin de Bucure\u0219ti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/buletin.de\/bucuresti\/nicoleta-vaia-bucuresteanca-cu-boala-rara-care-salveaza-an-de-an-viata-a-zeci-de-oameni-in-lipsa-ajutorului-de-la-stat\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nicoleta Vaia, bucure\u0219teanca cu boal\u0103 rar\u0103 care salveaz\u0103 an de an via\u021ba a zeci de oameni \u00een lipsa ajutorului de la stat\" \/>\n<meta property=\"og:description\" content=\"Sunt 182 de bolnavi de mastocitoz\u0103 \u00een Rom\u00e2nia, o form\u0103 de cancer, inclus\u0103 pe lista bolilor rare. 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