Zvichida zita racho harinzwike kujairika kwauri zvachose kana kuti zvimwe iwe unoziva zvazviri nekuti iwe waifanira kusangana nerudzi urwu rweganda muhupenyu hwako kana munharaunda yako yepedyo. Iyo inotyisa epidermis inozivikanwa se "butterfly ganda" kana "girazi ganda" Uye kunyangwe iine zita rakanaka, haina kunaka zvachose. Icho chirwere chisingawanzoitika chinokanganisa ganda rinokonzera mablisters uye kukuvadza kune kushomeka kwekukweshera uko munhu anako nechinhu chero chipi zvacho, kunyangwe aine zvipfeko.
Butterfly ganda chirwere chekugara nhaka
Butterfly chirwere cheganda inhaka, haina kutapurirana asi haina mushonga. Chii chimwe inokanganisa zvese ganda uye mucous membranes senge muromo, esophagus, uye perineal nzvimbo. Maronda ayo anogadzirwa nehurwere uhwu anotaridzika kunge anopisa zvakanyanya paganda uye anoramba achionekera nematambudziko mazhinji. Kuve maronda akavhurika achienderera, ivo vanowanzo kuve nezvirwere uye vanhu vanotambura nazvo zvinoita kuti vave nekusingaperi kwekushaya zvinovaka muviri uye kupererwa neropa.
Vana vanotamburawo nechirwere ichi nekuti kuve nhaka vanogona kuzvibata kubva pakuzvarwa, ndosaka inonzi "butterfly ganda" nekuti zvinoita sekudaro ganda rakapfava semapapiro ebhatafurayi.
Inogara kwehupenyu hwese
Vana vane "butterfly ganda" vachange vaine chirwere ichi kweupenyu hwese saka vachatofanira kudzidza kurarama nacho. Kune mhando dzakasiyana dzeguruguru ganda kuomarara uye hazvizosiyana nekufamba kwenguva. Apa ndinoreva kuti kana mwana aine mhando nyoro, haizowedzere zvakanyanya nekufamba kwenguva kuti ive yakaoma, uye kana iri yakaoma haigadzirise nekufamba kwenguva.
Zviratidzo zveguruvuru ganda
Kufanana nezvirwere zvese zviripo, Epidermolysis Bullosa kana butterfly ganda rinewo zviratidzo kutambura nevanhu vane chirwere ichi chinoshamisa. Asi zvinoenderana nerudzi rwechirwere, Epidermolysis Bullosa inogona kusanganisira zvinotevera zviratidzo:
- Alopecia (kurasikirwa nevhudzi kubva pamabhiribha paganda)
- Mapundu akakomberedza maziso nemhino.
- Mapundu akakomberedza muromo nehuro zvichikonzera matambudziko ekudya uye kuoma kumedza.
- Blister paganda semhedzisiro yekukuvara kudiki uye kunyangwe tembiricha shanduko.
- Blisters aripo pakuzvarwa.
- Matambudziko emazino, matanda akakomba.
- Zvinetso zvekufema, kukosora uye izwi rakashoshoma.
- Machena machena kana mapundu.
- Kurasikirwa kwezvipikiri kana zvipikiri zvakaremara.
Mifananidzo yechirwere ichi yakanyanya, yakaoma uye hatina kuda kusanganisa chero chinhu kunze kweiyo diki iri pamusoro, kuti tikupe pfungwa shoma. Kana paine munhu anofarira ona izvo zvinoburitsa zvaunokwanisa kugoogle
Mhando dzeEpidermolysis Bullosa
Epidermolysis Bullosa chirwere chemajini chinopfuudzwa kubva kuvabereki kuenda kuvana. Kune akasiyana mafomu eEpidermolysis Bullosa zvinoenderana nerudzi rwenhaka urwo rwunotambirwa nemwana, idzi dzinoiswa muzvikamu zviviri:
- Yakakura nhaka. Rudzi urwu rwenhaka rwunoitika kana mumwe wevabereki achitamburawo nechirwere ichi uye chichipfuura chakananga kuvana. Muchiitiko ichi pane mukana we50% wekuti pakubata kwega kwega mwana anogara nhaka rudzi urwu rwechirwere.
- Kudzokorora nhaka. Mune ino kesi, vabereki vatakuri vane hutano hwejenasi iyo inokonzera chirwere asi ivo vasina. Panyaya iyi, ivo ndivo vanofambisa chirwere kuvana vavo uye pane mukana wepamuviri pavana vanobata nhumbu kuti mwana anorwara neEpidermolysis Bullosa uye chimwe chezviitiko zviviri zvekuti mutakuri ane hutano. Vana vanorwara uye vanotakura vana vanongova nevana vanorwara chete kana mumwe wavo ariwo mutakuri wejeneti yeEpidermolysis Bullosa, mupfungwa iyi mune yega yega nhumbu pachave nemukana wekuve ne1% ane hutano, 4% mutakuri uye 25% inogona chirwere.
Butterfly ganda subtypes
Uye zvakare, vamwe makumi maviri Subtypes eEpidermolysis Bullosa kana Butterfly Ganda uye chimwe nechimwe chazvo chine zviratidzo zvinozvitsanangura. Mafomu akasiyana anogona kuiswa mumapoka matatu makuru anoonekwa seakanyanya kukosha:
- Simplex. Rudzi urwu rweEpidermolysis Bullosa ndiko kupaza kunoitika munzvimbo yepamusoro peganda. Iyo ampillae inoporesa uye hapana kurasikirwa kwetishu. Vaya vanokanganiswa vanogona kuvandudza uye kugadzirisa nekufamba kwenguva, asi havarapike.
- Junctional. Mune iyi mhando yeEpidermolysis Bullosa, mablister anoonekwa munzvimbo iri munzvimbo yekunze uye zvakare mukati meganda. Iwo madiki madiki avanosanganisira akasiyana kubva kune akasiyana anouraya kune mamwe anogona kuvandudza nekufamba kwenguva kunyangwe asina kurapwa. Izvi zvakasiyana zveEpidermolysis Bullosa hazviwanzo.
- Dystrophic. Mune iyi mhando yeEpidermolysis Bullosa, mablister anoonekwa munzvimbo yakadzika yeganda, mune dermis. Pakurapa, maronda anokonzeresa kudzoka mumajoini, zvichiita kuti zviomere mwana akabatwa kuti afambe. Blister inogona zvakare kuoneka pane mucous membranes senge mune iyo pharynx, mumuromo, mudumbu, ura, kufema uye weti maturakiti uye kunyangwe mukati memaziso emairi uye cornea.
Butterfly ganda zvinetso
Butterfly ganda rinogona zvakare kuve nematambudziko Semuyenzaniso:
- Zvirwere kubva kumablisters.
- Sepsis (sepsis inoitika kana mabhakitiriya kubva kuhutachiona achipfuura achipinda muropa uye achipararira nemuviri, zvichityisidzira hupenyu hwemunhu).
- Kuremara Zvakadai sekusanganiswa kweminwe kana tsoka, kusanzwisisika kusanzwisisika mumajoini, nezvimwe.
- Kushaya zvinovaka muviri uye kupererwa neropa. Blisters mumuromo zvinogona kuita kuti kudya nekumwa zvive zvakaoma zvikuru, zvinotungamirira kukushaya zvokudya zvinovaka muviri. Izvi zvinogona kutungamira kukushaya ropa (simbi yakadzika muropa), kunonoka kupora, uye kunyange kunonoka kukura muvana.
- Kupera mvura mumuviri Vhura mablisters anogona kukonzera kurasikirwa kwemvura yemuviri iyo inogona kukonzeresa kukurumidza kupera mvura.
- Kuzvimbirwa. Kuoma kwechituru kutenderera nekuda kwemaronda anorwadza muanus kunogona kukonzera kuti munhu aregedze kuita tsvina, zvichikonzera kupatira kwakakomba. Kunyangwe iyo inogona zvakare kukonzerwa nekusanwa zvakaringana zvinwiwa, chikafu chine fiber, michero nemiriwo.
- Matambudziko eziso Kuzvimba kweziso kunogona kukuvadza iyo cornea uye dzimwe nguva kutokonzeresa kupofomara.
- Kenza yeganda. Vachiri kuyaruka nevakuru vane mamwe marudzi echirwere ichi vanogona kuita cancer inozivikanwa se squamous cell carcinoma.
- Rufu. Vacheche vane rudzi rwakakomba rweepidermolysis bullosa vari panjodzi huru yekutapukirwa uye kurasikirwa nemvura yemuviri. Kurarama kwevava vacheche kunogona kukanganiswa nekunetseka pakudya nekufema. Zvinosuruvarisa vazhinji vevana ava vanofa vari vacheche.
Izvo zvakakosha kuti uteedzere kuraira kwechiremba mukati mezuva nezuva uye nekutevera kurapwa kwakatsanangurwa maererano nenyaya yeEpidermolysis bullosa iyo inotambura.
Iwe unogona kuwana rumwe ruzivo nezveguruguru ganda pa AEBE DEBRA (Sangano reEpidermolysis Bullosa yekuSpain)
Mhoroi, ini ndiri amai vevana vaviri, mumwe ane makore mana ekuberekwa uye mumwe mwana mucheche angangoita mwedzi minomwe, ndinoona kuti kubudikidza nechirongwa cheterevhizheni ndakawana chirwere ichi skin butterfly ganda kana kristaro ganda´
Chokwadi ndechekuti ne "kufa nekukurumidza uye maripoza ganda" ndanga ndichitya nemwana wangu wekupedzisira ... saka kana ndichikwanisa, ndinobva ndapinda mune mamwe mapeji kuti ndirambe ndichifambirana, zvine chekuita nenhau kana kufambira mberi mune izvozvi .
Nhasi ndawana peji rako uye ndanyatsofarira ruzivo rwamakandipa.Kubva ikozvino ndichienda kurishandisa zvakanyanya.
Ndatenda zvikuru nekuterera kwako.
ate MARÍA JULIA.
Kwandinogara kune kirimu inogona kushandiswa nevana ava, inopora zvikuru, kunyanya nekuti inoshandiswa kurapa kutsva kwemadhigiri akawanda paganda.Ndine hunhu hunogona kuvabatsira nekuti havazive kupora divi rekirimu iro ... kwandinogara Miss mukadzi anoigadzira muzvipatara uye haadi kukupa iwe nekuti anoishandisa yakanangana nevanhu kusvika apora kutsva kubva paganda rake kunge iwe usati wambozvipisa iwe Ndanga ndichida kutaura nemumwe munhu anokwanisa kuuya kuzomuona uye kumuedza kwenguva yakareba., Kwandiri ndiyo iyo
Ini ndinoshandira kambani yatine zvigadzirwa zvinobatsira kugadzirisa chimiro ichi kune avo vanotambura nazvo. Yangu email iri mariadhariza@gmail.com isu tinokutungamira nemufaro
Mhoro, ndiudze zita rekirimu, zvinoda marii uye unogona kuzviwana kuLima Peru?
Ndinoda kuziva kwaurikunyora uchibva uye kuti ungataure sei newe.- Mwari vakuropafadze, ndapota pindura nekukurumidza.
Moreno
Mhoroi, ndinoda kuti muzive kuti ndine hama yemurume ine chirwere chebhatafuru uye hama yangu anova amai vemwana ari kutambura zvakanyanya nekuti haazive machengeterwo ake
Mhoro .. Ndine vanasikana vaviri, mumwe ane makore mapfumbamwe uye mumwe ane gore nehafu.Wechipiri ane epidermolysis bullosa, anonzi Maria Pura »Purita». Varikumurapa kuDebra Foundation kuMexico kwandakanyura (izvo zvandiri kumirira mhedzisiro) uye bhiopsy kunze kweiyo yakaitwa muMexico City pakuzvarwa; izvi nechinangwa chekubatanidza ganda iro kuburikidza neDebra Spain hwaro ivo vachange vachiita varwere veDebra Mexico Kuti pedzisa kupedza hope dzinotyisa idzi dzinonzi Epidermolysis Bullosa, kana ikashandira mumwe munhu, bata Debra Mexico muGuta reMonterrey Mexico vachaita zvishamiso nevarwere vavo vane EB, tinovimba Mwari uye tinoziva kuti izvi zvichaitika munguva pfupi .. Mwari akuropafadze.
Mhoro Claudia
Ndine urombo asi pane zvinyorwa zvinotaura nezvechirwere chinonzi chakawanikwa muMexico varwere, kana zvirizvo, kuvatsvaga nekuti ndiri kuzosiya basa rechirwere ichi kune vadzidzi vangu, ndatenda
zullette muDebra Mexico muMonterrey Nuevo Leon Mexico vane ruzivo rwese ivo kunyange vane webhusaiti !!
Mhoro Claudia Mhoro zita rangu ndinonzi Giuliana, ndiri mudzidzi kuColegio Santa Teresita uye gore rino rapfuura takapa chirongwa pazvirwere zvekugara nhaka uye nemagene (nechinangwa chekuzivisa nezvavo) ndaive nechirwere cheEpidermolysis Bullosa; asi chirwere changu kuve nechokwadi kunodiwa kuti upe humbowo hwekongiri.
Kana iwe uchikwanisa kundibatsira ini ndingazvikoshesa.
Giuliana Romero, Santa Teresita Zvikoro, Florida.
Giuliana !!! Ndangoverenga yako comment !! nditsvage paFacebook Claudia Gomez Gonzalez (Mamy de Purita naIndira)… kana uchinge wafarira ndiri pamirairo yako… ndinovimba uye ichiri kukushandira zvakadaro paunondiwana !!
Mhoroi, ndaona kuoma kwechirwere ichi muhupenyu hwemunhu, ndinoshanda nekambani yeBio neNanotechnology, ndinoda kusangana nevanhu vaneEB kuti vabatsire. jpde5@hotmail.com
Mhoroi munhu wese. Ini ndiri 4th gore rekurapa mudzidzi. semester uye ini ndiri kufarira kuburitsa ruzivo nezvenyaya iyi mumisangano yesainzi inorongwa neyunivhesiti. Ndinofunga inyaya inonakidza kwazvo uye ndinoda kuti mundipe kubvunzurudzwa uye ruzivo nezvechirwere ichi uye nesangano .. Ndinovimba mhinduro inofadza… Mangwanani akanaka uye musara ..
Ndine mwanasikana ane mwedzi 4 ekuberekwa ane eb asi ndinotenda Mwari akatokunda kare
Ndinoda kuziva kuti wakunda sei, ndapota. muzukuru wangu ane mwedzi misere uye ane chirwere ichi, ndapota marvec71@hotmail.com
Mhoroi, zita rangu ndinonzi Stefania uye ndine mwana ane ganda re butterfly, zvinonetsa kwazvo kutsungirira asi ndinonamatira kuna Mwari kuti mundipe simba rekutsungirira, ndinovimba kuti munhu anoriverenga, anonyengeterera izvi vana vanotambura, maita basa
Kwemazuva akati wandei ndanga ndichinamata kuna Mwari nekuda kwevana vanobatwa nechirwere ichi chinotyisa uye kuna amai vavo nemadzibaba avo vanofanirawo kutambura zvakanyanya kana vachiona mwana wavo achitambura ... Munguva pfupi Jesu achadzoka kuzogumisa nyika ino. yekutambudzika ... imomo muNyika Itsva misodzi yese kubva mumaziso edu ichapukutwa !!!
Mhoro Madam, nezuro chaiye ndakaona chirongwa pamusoro pemwana anorwara nechirwere ichi pamwe nekugona kwachinoita nekuisa. Pakupedzisira ndaita zvaunokumbira.VANYENGETERERE NDinoziva kuti vane simba rakasimba uye Mwari anogara ainavo. Kuremekedza kwangu uye makorokoto kuna amai vakaita semi, ndinonzwisisa kushingirira kwese kwamunofanira kuita. Usarega kurwa (:
chirwere ichi chakanyanya ... chinoshamisa uye chinotaridzika zvakashata vana varombo
Ndine mwana wemukoma wangu ane mwedzi mumwe ane ganda re butterfly, kana paine munhu anoziva kubatsira muzukuru wangu, tiri kuenda kuvatenda kunyanya iye ari kutambura alejagoma2008@live.com
Zvakanaka, ndinogona kukuudza kuti ndanga ndisingazive kuti rudzi urwu rwechirwere rwuripo apo bi paterevhizheni iyo inotonhora nenzira iyo yandinogona kubatsira ndeyemunamato wangu kukumbira patre yedu yepamusoro yedenga nepasi kuti isunungure marwadzo uye Varape zvakakwana, iye chete ndiye anogona kuzvipa kumbundira kukuru uye kutsvoda kune wese munhu.Mwari vakuropafadzei narinhi. AMEN
NDINI PAOLA MORALES NDINE HOSHA YAEBB NDAKANGA NEMUSIKANA NDAKANGA NDIRI AMAI VASINA MURUME MWANASIKANA AKABEREKWA AIVA NEMAOKO NDAKAROORA UYE NOKUDZIDZA NDAKABVUNZWA NDAKAZIVA MUMWE MUKADZI ANOKOSHA PASI NENGUVA MWANA WANGU AKAFA, HAVANA KUFA. NEKUDZIDZISWA NEMAHARA KUSANGANA NEMAHARA KABHUKU KABHUKU KANA MWANA WAKO ARI MUMWE CLINIC ASI AGA CHINOGONESESA SACORLO DE IKOKO UYE KANA WAKO MUMWE MUNHU PEDYO UCHIWANAKO, ZVITARISE UYE NEKUTI KANA TIRIPO ZVIRI NEKUTI MWARI AKANYANYA FAIR NEKUTI KWEDU. TINO HAPANA CHINOFANISWA NEVAMWE VANHU KUTI TIITANE SEZVEDU PASI PANE ZVAKASHAYA KUTI TIRI
Ndinoziva kuti yave nguva yakareba kubvira pawanyora iyi Paola! asi ndichiri kukutendai ... ndave ndichitambura kwemazuva kubva kuchirwere ichi ... hazvisi zvekuti ini kana mwana wangu tinacho, ndiri mai vemwana ane hutano hwemwedzi mishanu ... asi ikozvino ndave amai ini ndinofunga nezvevana vane EB naamai vavo uye handigone kuziva kuti vari kutambura zvakanyanya ... ndinonamata mazuva ese kuti Mwari vabatsire vanorwara uye vape simba kuvabereki vavo !!! Mwari akuropafadze zvikuru !!!
Ndakazoziva nezvechirwere ichi kuburikidza nechirongwa cheterevhizheni uye chakaratidzika kunge chakaomera vana nevabereki, ndinongovimba kuti Mwari anovapa simba rakawanda uye munguva pfupi ndinogona kuwana mushonga wekurwisa chirwere ichi.
Ndiri kugara mutown iyo pandakazoita chirairo mwana wamai vangu akaona musikana uya waakandiudza uye pakanaka ndakaona musikana iyeye, murombo ari mudiki nekuti ndichiri naye, anenge aine makore matanhatu kana mashanu, ini ndikutukei Zvinonyadzisa sei zvinondirwadza uye musikana akanaka asi une mikoko nekuti amai vake vaimusvira ...
asi avo vana (avo vane shavishavi kana ganda rekristaro) vane maoko avo nemakumbo muzvimedu, ndakafamba senge robhoti
Mhoroi, ndine mwana ane mwedzi misere uye ane EB inorwara uye ndinoita zvese zvinobvira, handina kurwadziwa, ndinomupa mishonga yese yechisikigo nemiti, mwana wangu haana kugadzikana, asi maita basa Mwari wezita remwana wangu anonzi gabriela. sophia… ..dsd_888 @ hotmail.com
Mhoro .. chaizvo ndinoda kuziva zvakawanda nezvechirwere ichi, ndinoda kudzidza zvakawanda nekuti ndinotya kwazvo vana vangu ndine mukomana ane mwedzi gumi nembiri uye ndinotenda Mwari kuti haarwari nazvo asi hama yemurume wangu mwana ane chirwere ichi uye nekuda kwechikonzero ichocho ini ndoda kuziva zvakawanda nezveEB, ini ndoda kudzidza zvakawanda nezvazvo .. Chaizvoizvo ndinoda kuziva kana munhu achigona kuziva kana kwete iyo inopfuudza geni uye munhu angaziva sei .?
Mhoro mudiwa wangu, ndatambura nechirwere ichi chinotyisa kwemakore makumi mashanu uye handidi kuti chero munhu anacho, chinhu chega chakandipa chirwere chinotyisa ichi chave chiri matambudziko emarudzi ese kunyangwe ini ndagara ndichiita zvisingaite mitambo asi nekukurumidza ganda rangu parakakuvadzwa nyika yaizouya pamusoro pangu, mumakore ekutanga ehupenyu hwangu hunosemesa ganda rakanga risina kukuvara sezvandaita iye zvino mwero wepidermollosis bullosa yangu yaive yakapusa asi pamusoro pemakore dystrophic uye isingadzoreke uye nezera kana ikasadzorwa inopararira mumuviri wese ini ndakaroora uye mwanakomana wangu mumwe chete asati azvarwa ndakaudza mukadzi wangu kuti abvise nhumbu nekutya kuti mwana anozozvarwa aine chirwere, nerombo rakanaka benzi reMwanakomana wangu akazvarwa aine hutano hwakanaka, kunyange hazvo iye zvino benzi richiputa uye ini ndingadai ndaida kuti adzidze, ndosaka ndichiti ndakapusa. Ndakanga ndiri mutirongo fungidzira munhu ane epidermolosis muhomwe yemabhaisikopo, ndanga ndichirwa asi kunyangwe zvakadaro ndakazvidzivirira uye kanopfuura kamwe chete ndakatyora kumeso kwake, ndinoziva zvichanzwika kunge zvinosetsa asi naMwari ichokwadi, ndaive pamishonga uye mukondombera HIV hallucinate neepidermolosis colours asi hiv hutachiona hweaids fungidzirai mubatanidzwa wecoktel molotok ini handina kufa nekuti ndakasiya mishonga asi ndinoshuva dai ndakafa pakuzvarwa handishuwire chero munhu zvandakasangana nazvo nezvandasiya kuburikidza nemazuva ese ini ndinochenjerera nezvandinodya, mishonga nezvimwe nekuti ndicho chirwere che autoimmune chinowanikwa muDNA yemakromosomes eropa uye chero mushonga kana chikafu chinogona kutikanganisa isu kuburitsa mablister, kuruma, scabies, handitore. corticosteroids uye ikozvino ndazviwana ndiri mumamiriro ekufara anondibata, zvinorwadza, pane mazuva apo pandinofunga nezvekuzviuraya uye kupedza hupenyu hwangu hunosiririsa, handiputi, kana kutora zvinodhaka, ndakazvibvisa pachezvangu. Ini ndinotsvaga ruzivo pa internet nezve zvechipiri maitirwo kana iwo achienderana kuti asandikanganisa, inos inogoneka paganda, ndine urombo kuva neiyi nzira, asi chirwere ichi hachikodzeri kutaura zvinhu zvisina kubatanidzwa kune kukanganiswa kwayo uye kana ndikataura zvimwe zvinhu zvekuti havasi ivo vandinoti vanonyepa.Nechikonzero ichocho ndinonzwa tsitsi asi panguva imwecheteyo ndinokurudzira kubva pano kuti vabereki vane mwana anorwara ane chirwere ichi vabatsire uye vanzwisise uye tarisa zvese zvavanoita kuitira kuti vave nehupenyu husina kusimba sezvinobvira kana chirwere chisingaiti Icho chakakomba kwazvo, pane matanho matatu echirwere ichi: ari nyore, akabatana uye edystrophic, inova yakaipa, asi ese ari matatu zvinotyisa, ndinobvunza sainzi kana kuiswa kwema stem masero kuburikidza nejekiseni reropa neIntravenously zvinoshanda kuti vanozviisa kune vadiki, mweya wangu unowira pasi kana ndichiona vana varombo ava ndinotanga kuchema kuti ndinonzwa sei zita raMwari kana riripo nekuti ini handizive, ini ndinongoziva izvozvoTiri kurarama munyika izere nemhirizhonga uye ruvengo, uye zvese zvine chekuita neetsikidzi dzakaipa idzo dzakawanda.
Nhasi mudzidzisi wetsika atipa basa ... tinogona kusarudza musoro wataida ... chero bedzi uine chekuita nezvinhu zvinozivikanwa munharaunda yedu ... akatipa pfungwa yekuongorora chirwere ichi ... zvaiita senge zvinobatsira kune My qn naamai vanozozviziva kuitira kuti ndigone kuziva zvinhu zviri kuitika uye nhasi ... basa rangu richabata nenyaya iyi nekuti zvinoita kunge inonakidza kwazvo kutora vanoverenga matanho avanofanira kutora nekudzivirira izvi zvirwere ...
zvinonakidza kwazvo zvandinotaura
att mudzidzi ...
Mhoro: chirwere ichi chinongoita sekunge chakazvarwa kana chinogona kuoneka kana mukomana akura, nekuda kwechimwe chikonzero. Ndatenda….
Ndakanzwa nezvechirwere ichi chepaTV uye ini ndakawana chimwe chinhu chakaomarara kuvana vese nevabereki, ndinongovimba Mwari vachapa simba rakawanda uye vangangowana kurapwa k kurwisa chirwere ichi.
Kune vanhu vane chirwere ichi Epidermolysis Bullosa uye inopa tariro yekurapa, sezvo kwave kuisirwa mwongo wemapfupa uye kwakaporeswa vanhu vazhinji, saka usarase tariro uye utsvage neruzivo rwakanaka rwekurapa kwarwunogona kuita kuisirwa kwemunhu anoenderana newe uye uone uyo achabudirira, panogara paine mukana wekuti usashande asi edza, sezvo paine zviitiko zvakawanda zvekurapa izvo zvisingarape.
Mhoroi, ndinoziva kuti chirwere ichi chakakomba, amai vangu vane chirwere ichi, vane makore makumi mana nemana ekuberekwa, ini ndine makore gumi nemashanu uye zvakaoma zvikuru. Ini handidi kuti ndisiye chinodiwa amai vangu kwete pamwe nevamwe vana vavo kwandiri amai vangu. = (♥ -_-
MhoroI NDINOKUUDZAI KUTI NDAKAWANIKWA IYI PASI NETELE SHOW NDOZVI NDAKAITSVAKA KWAIYO PAInternet. CHIKAMU CHINO CHINONYANYA KUNYANYA KUNYANYA KUNE VANHU VANOTEPA NEZVAYO NEZVEMANGWANA HERE ZVEVANA VAVO. Muchiitiko changu, HANDINA, ASI NDINOFARIRA PAKUTANGA KUNOITIKA ZUVA NEZUVA NEVANA VANOBEREKWA NEZVINOKONZESA ZVINOGADZIRA NGUVA DZOSE.
KUBVA KUTI NDATENDA ZVAKANYANYA. UYE KUTENDA KWENZVIMBO YAKAZIVISWA KWAVABEREKI VANOTEVERA, HUGI NEMAZWI OKWANISA ...
Mhoroi, ini ndiri wechishanu-gore mudzidzi wedhigirii revanamukoti uye mune yangu chinyorwa chinyorwa ndakasarudza epidermolysis bullosa, ndinoda kuti munditumirewo zvinyorwa nezvenyaya iyi. Ndinokutendai zvikuru kubva zvino zvichienda mberi ..
Mhoroi, ini ndinodzidza mune sec uye ini ndinonyatsoda ruzivo urwu rwakakura
Kune vanhu vane Epidermolysis Bullosa (EB): Nhasi ndaona chirongwa paTV uye chinopa tariro yekurapwa, sezvo kuiswa kwemongo wemapfupa kwaitwa uye vanhu vazhinji vapora, saka usarase tariro uye utarise Ruzivo ne chiremba akanaka kwaunogona kuisa munhu anoenderana newe uye uchaona kuti vachave nemhedzisiro, panogara paine mukana wekuti hazvishande asi iwe unofanirwa kurapa, nekuti kune akawanda mamiriro ekurapa izvo hazvirape. Chii chinogona kudzikamisa iko kudyara kwemongo.
Ndinoda kuti munditumire ruzivo sezvo rwuchinakidza uye ndicharusuwa mune rekurapa basa .. ..ndatenda :)
ndinyorere ini estruemagus1@gmail.com uye ndichakuzivisa nezvese zvaunoda pamusoro pechirwere ichi. Ndanga ndichirwara nacho kwemakore makumi mashanu uye ndine hutachiona hweHIV, ndinozvichengeta, handisvuti, handinwi, ndine hutano.
hola a todos
Husiku husiku ndakafadzwa nechirongwa chandakaona nezvechirwere ichi! makorokoto mazhinji kuvabereki nevanhu vanofanirwa kuchengeta vese vanorwara uye vakasimba uye vakashinga
Chokwadi ndechekuti, ini handizive zvakawanda nezvechirwere ichi uye ndinofungidzira kuti avo vanorwara nacho vanofambirana nezvidzidzo nemishonga mitsva, asi handina kukwanisa kurarama ndakadzikama ndisina kuvapa "mushonga" wakashanda naamai vangu zvinoshamisa hachisi chirwere chimwe chete uye kana Chinoita senge, asi amai vangu vaifanira kuvhiya chibereko uye vakatadza nekuti vaive vakaipa nemasero matsvuku eropa uye vakamutumira mushonga kweinenge mwedzi mitatu, munhu akamukurudzira kutora . nerombo rakanaka haina kuravira zvakaipa, ndinoifarira zvakanyanya, mwedzi Vakaita ongororo uye dr vakashamisika nekuti amai vangu vakabuda chaizvo masero eropa uye vakagadzirira kuvhiyiwa, ndinofunga izvi zvinogona kukubatsira, izvozvi gadheni rizere nechirimwa ichi, unogona kutsvaga pamhepo zvese zvakanakira chirimwa ichi, kana mumwe asingakwanise enderera ndinogona kukupa iwe, pamwe hazvivarape asi zvirinani zvinokubatsira !! zvakare imwe nguva yapfuura ndakaona chirongwa pane vakapisa vanhu uye tepezcohuite kurapwa nemhedzisiro yakanaka kwazvo !!! Vanoidaidza kuti muti weganda uye ndinoziva kuti haisi kutsva asi pamwe ichapora nekukasira, kwaziso zhinji uye ndinovimba kuti munguva pfupi iri kuuya pane mushonga wechirwere ichi
Mhoroi, ini ndiri tati uye ndakanaka, handizive kana chiri chirwere asi ndinacho kubva pazera diki kwazvo, chii chinoitika ndine mavara pese pese pese pangu panyama pakaita semamota makuru pese pese panyama uye shamwari dzangu dzinotaura ini vaquita uu zvimwe zvinhu zvakawanda nekuti ini ndine ganda jena uye shava chichava chirwere chipi ?????
Zita rangu ndinonzi Gilberto uye ndinoziva nezvechigadzirwa chiri kushanda padanho remaseru uye kubatsira vanhu vakawandisa vane matambudziko akakomba nekuti chinoshanda padanho re mitochondrial (626 )230-5587
Hola
Ndiri kuda iwe kuti undipe ruzivo rwakawanda nezve chirwere ichi.
Ungaita sei kuva nehupenyu huri nani?
* Ndezvipi zvekudya zvakanaka
* Chero chizoro kana kurapwa kana dermatologist inogona kubatsira
Mhoroi, ndiri kufarira kuita yangu yepasirose thesis mune psychology panhau iyi, epidermolysis bullosa, ndinoda kunyora bhuku revabereki kubata nechirwere ichi chevana vavo kubva pakufunga kwepfungwa uye kuvabatsira neimwe nzira, ini ndinobva kuCosta Rica, ndinoda kuti munditumire ruzivo.Ndatenda
Kana iwe uchida kupa hupenyu huri nani kune vana ava, kuchengetwa kwakakosha, uye izvi zvinoreva shanduko yemaitiro, vana ava vanofanirwa kuchinjwa zuva nezuva mapfekero avo, uye pakuisa yakachena vanofanira kutanga vaseline, mabhati avo. nemashampoos, kuwacha mbatya dzako nesipo dzakapfava, kubvisa zvinyorwa kubva kumatanda, nekuti kunyangwe diki diki rekukuvadza rinokanganisa ganda rako.
Uye chinhu chega chinobatsira kudzikamisa marwadzo rudo urwo iwe rwaunogona kupa, nekuti ipapo chete ndipo paunovapa chivimbo uye chengetedzo yavanotsvaga.
Mangwanani akanaka, zvakakodzera kuedza imwe nzira yekurapa, kunyanya kana zvasvika pakutsvaga kweMexico zana, isu tinofanirwa kutendeuka kuti tione biomagnetism yezvokurapa pamwe chete ne bioenergetics, haina kukonzera iatrogenesis uye panogona kunge paine shanduko muDNA nekugadziriswa kwema chromosomes, kunyangwe musimboti wekutanga ndeyekuti kuongororwa hakupihwe pamberi kusvikira gadziriso yemuviri yapera; saka chingotsvaga mambure wezita raDr Isaac Isaac Goíz womushanyira. Uyu ndiwo mupiro wangu uye Mwari akuropafadzei.
Mhoroi, ndaona chirwere ichi paterevhizheni, ndine hurombo nezvakaitika kwavari nevana ava, asi ndine mubvunzo, vane zviratidzo zvipi kana makwapa aonekwa?
Mhoroi ini ndine makore gumi nerimwe ekuberekwa (Ndinoziva kuti munofunga kuti ndiri mushandi mukuru asi hei…) uye ndaona mifananidzo uye ndakashamisika. Aigona here mumwe munhu kunditsanangurira chirwere icho ???
Mhoroi, ndiri amai vevana vasere uye vatatu vacho vane chirwere chinotyisa ichocho, mumwe wavo akatofa saka kune vana vanomwe, zvinotyisa uye hapana mushonga paBibongi de la Plata Institute, vanotora kapu kuvapa kuvana vangu kuti vatenge gauze uye zvese izvo kana vakabatana.Ndinoda kukutendai zvikuru
Nhasi ndanga ndichiona nyaya iyi mukuwanikwa. X Mwari anorwadza kwazvo tango kuvana pamwe nevabereki vavo, chekutanga ndinokumbira kune wamasimba ese kuti Ngirozi dzavo pano paPasi dziwane mushonga, uye vendotp ave Mwari zvinoita sekunge uku ndiko kuongorora kwekuisazve kugarisana kwemongo wemapfupa kune Tariro yekurapa… .nguva dzose Tariro haifanire kurasikirwa uye nekukurumidza kuchave nekurapwa… x panongovapo Mwari neNgirozi kuvachengeta uye Les de Fortaleza
NDANGA NDICHITARIRA NEWS PATV IZVO MANGWANANI NDAKASANGANA MUFANANIDZO USINGAFADZE WEMWANA MWANA ANEMATatu-ZVIURU ANE HOSHA IYI, ZVINONYANYA KURWADZA KUNORWADZA KUONA NYAYA YAKadai, KUSVIKA NDAKASVIRA MIMWE MISODZI, NDINOVIMBA KUTI SAYENZI ICHADA ASI KUWANA MAMWE MAZUVA ZVAKANAKA SEI ……… .. KUMBIRA MAIYA AMAI VANE VANA VAVO.
Eya mashoko akanaka asi zvinosuwisa kuona kuti kune vana vane chirwere ichi, zvakanaka ndine hama dzangu uye ndingadai ndisingadi kuva nechirwere ichi Zvinosuruvarisa zvikuru kuona vana ivavo uye handidi kuva munzvimbo yavo Mwari chete anoziva kuti sei achiita zvinhu vasingatendi
Mhoroi, ndine vana vamai vangu vane makore masere masere, vane chirwere ichi chisingawanzoitika chepidermolysis bulosa, ndinoda kuziva zvakawanda nezvechirwere ichi uye tinodawo rubatsiro sezvo vabereki vavo vari mari shoma, ndokumbirawo mubatsire vasikana ava, ndatenda
Mhoroi, ndine chirwere uye ndine makore 29, ndakaroora uye ndine mwanasikana ane makore 7 ekuberekwa uye ari mutano asi mwana wangu wechipiri akaita mumwe mwana asi zvinosuwisa kuti akafa nechirwere chinonzi septisemia. iye kubva pachirwere chimwe chete. Ndine chirwere uye ndinozvibvarura kubva mukati nekurasikirwa nemwana wangu asi ndaisaziva kuti erea genetiko asi ndinogona chete kuda a kosa Mwari anoziva ndiani uye kana ndisingagone kreer k haasi apa dai kutenda kwangu kwaive k dai ndaigona kurarama kwenguva yakareba dai ndakatozviita asi Mwari vakasarudza kusaita uye ini ndaisada kuipa imwe k kuti irege yakasiya basa uye trankila asi ndichiri kuchema nekuti haisi pano …… ..
Mhoroi, nyaya yenyu yaitaridza kusuruvara kwazvo asi munofanira kuziva kuti Mwari vanoitira zvinhu chimwe chinhu kunyangwe muchiziva kuti mwana wenyu anemi nguva dzose… !!!
Hi Jarhe, ndine chirwere uye ndine makore 27. Ndinoda kusangana nemi. Rimwe zuva ndinoda kutanga mhuri. Uye ndine kukahadzika kwakawanda. Ndine hurombo nemwana wako. Asi ini ndinoona kuti tinogoverana kutenda kumwe chete. Kana iwe uri kuvimba muna Mwari, pane chikonzero chekuti iye amutore. Zvichida hupenyu hwako huchave hunofara neuyo pano munyika ino uzere nekutambudzika. Kumbira Mwari kuti akunyaradze uye uzadze nzvimbo iyo mwana wako akasiya nerudo rwake.
Ngatibatsirei vana ava, vane moyo, ini ndinodzorera zvakaipa, chii chichaitika, ngatibatsirei vana ava, ndingavabatsira here, ndapota:
Zvakanaka, mumwe munhu ndokumbirawo anditsanangurire nezve chirwere ichi (marapirwo acho kuti urarame) ndechekuti sekutaura kwandakaita kuti ndine makore gumi nerimwe uye handizive kuti inorapwa sei ndatenda nerombo rakanaka
MuCOSTA RICA, tichaenda kuratidza kuti vana vane chirwere ichi uye vazhinji, vanogona kuzorodzwa nemvura inoshamisa, ADS, inogadzirwa nemishonga yemusango, iyo isingade mishonga yekuchengetedza kunyangwe makore apfuura, uye inogadzirisazve seli yese mhenyu Muviri wedu. Izvo zvakashatiswa hapana chekuita, asi isu tichakuchengetedza iwe pazviri.
Ndiri kufara zvikuru kuti vanowana mushonga uye
Ndinopa kutenda kune avo, vakaita seni, vakaita rombo rakanaka rekuzvarwa zvakanaka uye neavo vachakurumidza kuve
Mhoroi, zita rangu ndinonzi Luis uye ndinonzwisisa vanhu vese ava kuti tine dambudziko iri asi Mwari chete ndivo vanoziva mweya wangu uye ndine mwanakomana anova ndiye wekutanga uye akazvarwa asingazive kurwadza kwazvo. Asi nekuda kwekuedza kwemukadzi wangu nekutarisirwa kuri kuitwa neAsia, handizive kuti chii chaizoitika asi tinoda kuti kana vachiziva chero mushonga kana chimwe chinhu chinoporesa chirwere ichi, atova nemakore gumi nerimwe uye anoda Jesu Alexis asi dzimwe nhau dzaida kuva neimwe Asi isu takatya kuti zvaizoitika zvakafanana, takazvikurukura nachiremba nzira dzipi dzataigona kuita kuti mumwe mwana asazobuda, nenzira imwecheteyo yaakati yaive 11% iyo zvaizoitika zvakafanana kana kuti zvaizofamba zvakanaka asi isu takanga tisingazive zvekuita asi takasarudza uye akazvarwa zvakanaka ndatenda bye. Anonzi Luis Angel uye havazive kuti ane rudo rwakadii consuermanito uye anochengeta nezvake zvakanyanya nekuti takati aifanira kungwarira nemunin'ina wake, ane makore matanhatu asi tinoda kukumbira vanachiremba kuti varwire kutsvaga mushonga wechirwere ichi, havazive kurwadza kuri kuita mwana nechirwere ichi, ndinokumbira vanhu vese ivavo kuti vabatane varwire vana vedu, ndinokutendai uye kana muchiziva mushonga, ipai ruzivo pano kana kutsikisa.
Mwari wangu, zvinonyadzisa kuti vana vapfuure neizvozvo ... uye vabereki varombo vachiona vana vavo vakaomerwa, ndinoshuva kuti dai mishonga yafambira mberi zvakanyanya kuti matambudziko aya agadziriswe pasina kunetsa, ndapinda peji rino na mukana uye ndaverenga ... rombo rakanaka kuvanhu vese vanotambura ...
Kubva kuColombia ndanga ndisingazive kuti chirwere ichi chiriko asi zvinoita kunge chinotyisa kwandiri nekuti sevabereki zvinosuwisa kuona mwana achitambura, ndinoda kuudza munhu wese kuti kuna Mwari mukuru uye ANE simba zvikuru uye kwaari hapana chinogoneka uye anoti mushoko rake anoshevedzera kwandiri ini ndichakupindura, usarase kutenda, ndichakutora muminamato yangu.MWARI vakukomborere, usarase kutenda kwako.
Mhoroi, kwaziwai mose, ndine hama yemwedzi mipfumbamwe kubva paakazvarwa achitambura nechirwere ichi, vanachiremba havasi kuwana zita rechirwere nhasi, nekuda kweichi peji, ndakakwanisa kuwana zita musikana uyu anotambura, zvakanyanya pamaronda iwayo isu hatina chatinowana chekumurapa
ndine urombo x ndikuudze iyi io asi hosha haina mushonga lociento = (
Mhoro zita rangu ndinonzi melisa ii ndinorwara zvakanyanya x vana ava io ndakazoziva nezvechirwere ichi x the cablevicion ii io ii hanzvadzi yangu yaida kutsvaga rubatsiro vana ava vanokodzerawo kuva nerudo ii hazvisi zvekuti vane chirwere ichi ini handina kukodzera rudo kambani kutora chikamu inorambwa x ivo vanhu zvakare <3 ndinovada Tkm.! <3!
inonakidza chaizvo
Ndini baba vemwana asina kuzvarwa uye chirwere ichi chakaonekwa munguva pfupi yadarika handizive zvekuita ndinonetsekana zvikuru ndinoda rubatsiro ... =)
zvakanaka
Nezuro ndakaziva nezvenyaya yemucheche ane ganda regirazi, mumwe munhu anoziva nezve sangano rinogona kubatsira mwana uyu, kuti agotarisirwa nekuti amai vake vari kukumbira rutsigiro nekuti ivo havana zviwanikwa uye mwana ari kutambura, tichaenda kunobatsira. nhasi kwavari mangwana Mwari ngavatidzivise tinogona kuva isu ...
Ndinofunga handifaniri kuzvinyima ini saka ndinokuda
shandisa colloidal sirivheri mukushandisa kwekunze, .. zvizivise iwe kana uchida kutanga asi ivo vanoti mhedzisiro yakanaka inodzivirira hutachiona, kumutsidzira matishu uye kuibatsira kupora zvirinani, uye nechinangwa chako chose chakanaka, .. rombo rakanaka
Ndine urombo kwazvo kuti une chirwere ichocho
Mhoroi, zita rangu ndinonzi Giuliana, ndiri mudzidzi kuColegio Santa Teresita uye gore rino rapfuura takapa chirongwa pazvirwere zvekugara nhaka uye zvechibereko (nechinangwa chekuzivisa nezvazvo) ndaive nechirwere cheEpidermolysis Bullosa; asi kuti chirwere changu chive ichokwadi zvinofanirwa kupa humbowo hwekongiri.
Kana paine mumwe munhu anoda kundibatsira nekundipa humbowo hwavo, ini ndingafarire kwazvo.Ndinokusiira e-mail yangu kana uchida kundibatsira: guliana_04_03@hotmail.com
Giuliana Romero, Santa Teresita Zvikoro, Florida.
Hei, ndinobva kuTijuana, ndinoda kutaura seSpanish, saka usabve pachidzidzo, namata uye utende muna Mwari nekutenda, zvese zvinogona kuitwa, zviite uye uchaona kuti vakomana nevasikana ava vanozosimudzira , aiwa havazovandudzika, vachave vakagwinya uye vakachena sekunge vasina kumbobvira vaita chirwere ichocho ndinoti kwauri kana uchinyatsonzwa kuda alludar namata uone. Kana vajekesa izvo, vanoisa yakajeka chirevo, hazvizove izvo ipapo asi zvishoma nezvishoma zvinhu zvishoma zvinoitika. Huyai vakomana, vanamai madzibaba namatai munamate. 🙂 😉 ♥ u ♥….
Ndakagadzira chidimbu chezano kuti unamate: waizviziva here kuti kunamata kune simba, kungonamata chete kutaura kuna Mwari uchinzwa zvakadzika mumoyo mako uchigadzira uye nekutenda kwako kukuru agan iye.
Ndine urombo kutenda
Noelia tarisa, ndine makore gumi nemaviri, zvinonakidza kuona mumwe musikana anofarira.Zvangu, kana iwe uchizviona, ndingafarire kuita hushamwari hwakakura.
😀
Mhoroi, ini ndiri Bety Reyes anobva kuChiapas Mexico, kweanopfuura makore makumi maviri ndakasangana neshanduko mumasero eganda rangu anonzi psoriasis, ndinoziva kuti haina kusimba uye inorwadza saE.E asi yakandikuvadza kwemakore mazhinji, chese chinhu panguva ino ndaitarisa ndisina kuwana chero chinhu chingachibvisa nekuti sekureva kwachiremba hazvirapike. Vazhinji veavo vanotaura pano kuti munamato une simba vari pachokwadi, vachitsvaga Mwari uye murudo rwake ndinoziva kuti kuda kwavo kwatiri kuve noutano uye vanofara.Vanogona uye vanoda kuita chishamiso mumiviri yedu Ndave ndichizvirapa kwegore nehafu uye mutende ini kuti chishamiso chiri kuitika muganda rangu, ndinoziva zvakakwana kuti zvese zviri kuitika uye kuti unofanirwa kushingirira. Ini ndakangoziva nezve ichi chirwere cheE. Ndakanzwa simba mumoyo mangu ndosaka ndakashinga kunyora mitsara iyi ndinoziva kuti ndinogona kukubatsira kana iwe uchida ruzivo ini ndinokusiira data rangu uye ndiri pano kuzokushandira mune zvese zvandinogona. Mwari vakukomborere!
Beatriz Reyes weBotello
Facebook Betty Reyes
tsamba betybotello@hotmail.com
Cel. 961 6524670
Imba 01 961 121 3595
Zvakaoma kwazvo kuziva kuti vadiki vanotambura nechirwere ichi, ndine hurombo
Manheru akanaka, chokwadi ndechekuti, ndine musikana ane makore mashanu ekuberekwa, agara achibatwa sekunge anga asina kuzivikanwa atopic dermatitis, asi panguva ino, hapana imwe yemishonga inomushandira, dzimwe nguva ndinofungidzira kuti angatambura kubva pahunyoro EB, kwete kana mumwe munhu achigona kundibatsira izvozvi kuti vanachiremba vari muno muColombia kusvika zvino havandiudze chero chinhu kunze kwedematitis ndinotenda zvikuru nhare yangu 5
Mhoro MASHOKO AKANAKA MAZUVA ANO ZITA RANGU ARISBETH SVONDO NDIRI MEXICAN ANOBVA KU STATE YE VERACRUZ NDINE BB AIYO AKABEREKWA NE BULLOSA EPIDERMULYSIS ANE MAZUVA 26 ECHO AKABEREKWA ACHIRI MUCHIPATARA ASI MADOKOTA ANOPONESA, ZVAKAWANDA CARE. DE VAJOS RESOURCES AND HANDI KUZIVA KUTI MUMWE MUNHU ANGANDISVIRA DA DA FOUNDATION KWAMUNOGONA KUNGANDIBATSIRA NEBB RANGU MUMEXICO NEMUNHU WESE ANOITIKA X IZVOZVO PANE MUBVUNZO WOKUBVUNZA KUTI UENDE Q AGA US CHINOSHAMISA, WANGU Nhamba YENhare 2791103066, YANGU Nhare YENYAYA 2968212120
MHORO WANGU MUSIKANA, NDAKAVHARA BHUU EPIDERMOLOSIS KUBVIRA MAKORE 50 ZVAKAPfuura, HAPANA KURAPWA KWAKANAKA, KANA Mishonga INONYANYA KURWARA UYE ASI VOSE VANOTSIGIRWA VACHITENDA PANE RUDZI RWEROPA RWAKANYANYA MUDZIMAI WAKO. YAKANYANYA KUKOSHA YEMWANA WAKO UIISHURE, SIPO INOPARADZA PH YEDU GANDA. IMBA INODA KUNYANYA KUKOSHA MUMWE MUDZIMU PAKATI pe20º C _25º c muzhizha uye munguva yechando kudziya asi kwete kupisa kwakanyanyisa kunokanganisa zvikuru ganda redu uye munguva yechando inooma nekutonhora isu takaita semunhu anoti pfumisa vana, chero chinhu chinotibata isu sekunzwisisa girazi kubva kubhemia ndosaka vachitidaidza isu vana vane shavishavi ganda rekristaro vana nekuda kwekuti tinonzwisisa zvakadii hazvireve kuti zvinotibata zvakanyanya paganda, maoko, mabvi, magokora, hatina Nzara dzemaoko nemaoko tinoshaya kugadzikana kwekubata zvinhu.Takaremara panyama semapofu kana chero munhu anotambura nehurema.Ndinobva kuSpain _valencia _ yakanaka guta. Zvakanaka, izvo zvaunofanirwa kuziva ndezve nezve vamiriri vekunze izvo zvinogona kukanganisa mwana wako, kutonhora, kupisa, chikafu, hutsanana, kurapwa kunodiwa, pamwe 2 yepamusoro, zvichanyatsoita seizvi, 2 kurapa, kurapa kunoderedza marwadzo uye kudzivirira hutachiona kana zviripo uye zvinorerutsa zviratidzo zvechirwere. Shinga uye shivirira mwana wako mudiki kusvikira akura kunge ndaive nemakore makumi mashanu ekuberekwa uye ndichiri kutsungirira chirwere ichi. Ndine urombo kuti mwana wako akakwaziswa.
Ndine makore makumi mana nemana ekuberekwa, ndiri mutakuri wechirwere ichi asi havana kana kumbondipa zita rekuti geni.Ndine vana vaviri uye ivo, ndinotenda Mwari, vakabuda zvakajairika uye ndinovimba kuti vasati varoora vanoona kuti kwete ivo vane iro jeni, maita basa.
Ndiri kubatsira musikana ane makore manomwe ekuberekwa, maoko ake madiki akanamira uye azere nemablisters, kuno kuEcuador hakuna ruzivo mune izvi, ndamutengera mafuta, emolin, mupax, gauze uye zvekuwedzera zvekudya, manapukeni. Chandinoda kuziva ndechekuti kana paine kumwe kurapwa kwepamberi kumwe kwekumubatsira, mhuri yake haina kana zviwanikwa asi izvo hazvizove dambudziko nekuti ndinozvikweretesa kuti ndibatsire nechikamu chehupfumi asi ndakanetsekana nekuti pano hauone chero chinhu chako chichava nani, zvinopesana.
rubatsiro rwako ndapota !!!
R.CH.
Masikati akanaka mose, ini ndiri Gisselle Salja, ndine makore makumi maviri nemana uye ndine Epidermolysis Bullosa simplex, ndinogona kukuudza kuti zvave zvisiri nyore kwandiri, kana kune chero hama yangu, kurarama nechirwere ichi; asi ndinotenda Mwari kuti ndakapona uye semunhu wekupedzisira dermatologist akandiona akandiudza kuti: "haufe nazvo, asi haumbofi wakarapwa futi" ndakafunga kuvanyorera kana nyaya yangu ikashanda senzwi rekurudziro amai ivavo vanoshuvira kuona vana vavo vachitambura neizvi, asi ndinokuvimbisai kuti zvinongwarira chete, chenjera kusavarega vatapukirwe, kuparadzira mafuta avo, chero zvinokurudzirwa navanachiremba, hutano hwevana vako hunotsamira pauri Tenda Mwari Ini ndaive nevabereki vasina basa kuti vandione zviri nani, uye nhasi sezvandinokuudza, ndinogona kurarama nechirwere chinorwadza ichi. Usarase kutenda! Kumbundira kubva kuColombia.
Ndatenda zvikuru Gisselle nekutitaurira nezve chiitiko chako. Shuwiro yakanakisa.
Mhoroi, ndine shamwari yangu ine mwana wake ane chirwere ichi uye vhiki rino vakangoita tsaona yemumugwagwa uye El Niño ari serious.Ndinoda kuziva kuti mungaite sei. Tarisa kana paine chero munhu ane zano ndapota taura nezvazvo