Maoko netsoka dzako zvinongogunun'una here? Kana kuti unonzwa wakaguta kunyangwe mushure mekudya chikafu chidiki, kana kuti unonzwa kusagadzikana mudumbu kusinganzwisisike? Dzimwe nguva tinofunga kuti izvi zvinhu zvakajairika, asi kumashure kweizvi panogona kunge paine chirwere chakakomba, asi chisingawanzo taurwa nezvacho. Nhasi tichataura nezvechirwere chakadaro, chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe chizvarwa , uye chinozowedzera zvishoma nezvishoma. Icho chirwere chinonzi hATTR Amyloidosis.
Zvichitaurwa zviri nyore, chii chinonzi hATTR Amyloidosis?
Zita rakazara reizvi ndiHereditary Transthyretin Amyloidosis. Ticharidaidza muchidimbu kuti hATTR . Ichi chirwere chisingawanzoitika chinogarwa nhaka, zvichireva kuti chinopfuudzwa kuburikidza nemajini.
Fungidzira, chiropa chemuviri wedu chinogadzira puroteni yakakosha inonzi transthyretin (TTR) . Mumunhu ane hutano, puroteni iyi inoita basa rayo uye inobva yarasika. Zvisinei, mumunhu ane chirwere chehATTR, nekuda kwekuchinja kwemajini, puroteni iyi yeTTR inogadzirwa muchimiro chisina kunaka. Zvakafanana netoyi yakagadzirwa zvakanaka ichidonha.
Mapuroteni aya akapetwa zvisina kurongeka anosangana pamwe chete oumba tumapundu tudiki. Tinoti mapuroteni aya mapundu amyloids . Mapuroteni aya anotanga kuungana munzvimbo dzakasiyana dzemuviri wedu, kunyanya munhengo dzakadai setsinga, moyo, neitsvo. Kufanana netsvina inonamira mupombi yemvura, mapuroteni aya anotanga kukuvadza nhengo idzodzo. Izvi zvinogona kukonzera matambudziko akakomba uye kutoisa hupenyu panjodzi. Asi mashoko akanaka ndeekuti ikozvino kune mishonga yakanaka yekudzora zviratidzo izvi.
Chiremba wako anogona kungoidaidza kuti "Amyloidosis," nekuti hATTR imwe yemhando yezvirwere zvinonzi izvozvo.
Ndezvipi zviratidzo zvinogona kuitika zvechirwere chehaTTR?
Nekuti chirwere ichi chinokanganisa nhengo dzakawanda dzemuviri, zviratidzo zvacho zvakasiyana-siyana. Dzimwe nguva zviratidzo izvi zvakafanana nezvezvimwe zvirwere zvakajairika, saka zvinogona kuoma kuona chirwere chacho.
Zvinonyanya kukanganisa sisitimu yetsinga. Kana mapuroteni aya achiungana mutsinga dzinobva kuuropi dzichienda kumuviri wese, tinoti chirwere ichi chinonzi Polyneuropathy . Saka unogona kusangana nezvinhu zvakaita seizvi.
| Sisitimu yakakanganiswa | Zviratidzo zvinogona kuitika |
|---|---|
| Sisitimu Yetsinga |
|
| Mwoyo | |
| Sisitimu Yekugaya | |
| Zvimwe zvinhu |
Chinonyanya kukosha ndechekuti kukura kwemoyo uye kurova kwemoyo zvisina kurongeka kunokonzerwa nechirwere ichi zvinogona kuisa hupenyu panjodzi. Saka, unofanira kungwarira zvikuru nezvezviratidzo izvi.
Chirwere ichi chinokura sei? Ndiani ari panjodzi?
Sezvinoreva zita racho, ichi chirwere chinogara nhaka . Kana uine chirwere ichi, imhaka yekuti wakagara nhaka majini asina kunaka kubva kuna amai vako kana baba vako (kana vese vari vaviri).
Ichi chirwere chinoonekwa sechirwere chisingawanzoitiki pasi rose. Zvisinei, mune dzimwe nyika, semuenzaniso, Portugal, Japan, neBrazil, chirwere ichi chinowanzoonekwa. Kunyangwe pasina ruzivo rwakanyanya pamusoro peizvi muSri Lanka, zvinofungidzirwa kuti panogona kunge paine nhamba huru yevarwere vasina kuongororwa chirwere ichi nekuti zviratidzo zvacho zvakafanana nezvimwe zvirwere.
Zviratidzo zvinogona kuonekwa pazera ripi zvaro, kazhinji pakati pemakore makumi matatu nemakumi manomwe. Zvinobata varume nevakadzi zvakaenzana.
Chiremba anoongorora sei chirwere ichi?
Kuziva chirwere ichi kunogona kuoma nekuti chine zviratidzo zvakawanda.
Kubvunza nezvenhoroondo yemhuri uye zviratidzo
Kutanga, chiremba achakubvunza iwe nemhuri yako nezvenhoroondo yehutano hwako.
- Pane mumwe munhu mumhuri yako ane chirwere chemwoyo kana kuti mwoyo wako uri kukura here?
- Unonzwa kusanzwa kana kupisa mumakumbo ako here?
- Uri kurwadziwa nemudumbu, manyoka, kana kuti kuvimbiwa here?
- Unonzwa dzungu here paunomira?
- Une matambudziko ekuona here?
Miedzo yakakosha
Zvichienderana nezviratidzo zvako, chiremba wako anogona kukurudzira mimwe miedzo yakawanda.
- Kuongororwa kweropa neweti: Izvi zvinobatsira kuona kana paine mapuroteni asina kujairika mumuviri.
- Kuongororwa kweTishu: Iyi ndiyo nzira huru yekusimbisa chirwere. Kazhinji, kanyama kadiki kanotorwa kubva paganda remafuta pasi peganda redumbu rako uchibatsirwa neanesthesia koendeswa kurabhoritari. Kanogona kushandiswa kuona kana puroteni yeamyloid yatataura nezvayo yakachengetwa.
- Kuongororwa kwemajini: Kana biopsy yangosimbisa kuvapo kweamyloid, kuongororwa kweDNA kunoitwa kuti zvionekwe kana iri nhaka yehATTR kana imwe mhando yeamyloidosis. Izvi zvakakosha zvikuru pakuronga kurapwa.
- Mimwe miedzo: ECG neEcho bvunzo dzekutarisa mashandiro emoyo, uye zvidzidzo zvekufambisa tsinga dzemuviri kuti dziongorore mashandiro etsinga zvinogona kuitwawo.
Nekuti ichi chirwere chisingawanzoitiki, havasi vanachiremba vese vanogona kunge vaine ruzivo rwakakura nacho. Saka, zvakakosha kutsvaga imwe pfungwa kubva kune mumwe nyanzvi mushure mekunge chirwere chacho chasimbiswa.
Ndeipi mishonga yekurapa chirwere ichi?
Kurapwa kwehaTTR kunoenderana nezviratidzo zvako uye danho rechirwere. Pane zvinangwa zvikuru zviviri zvekurapa. Chimwe ndechekudzora zviratidzo. Chimwe ndechekudzora kugadzirwa kweprotein yeTTR isina kujairika, inova ndiyo honzeri huru yechirwere.
1. Kurapa zviratidzo
- Kana mvura ikaungana mumuviri nekuda kwematambudziko emwoyo kana itsvo, mishonga inobvisa mvura mumuviri inoshandiswa kubvisa mvura iyoyo yakawandisa.
- Kunewo mishonga yekurapa matambudziko ekugaya chikafu akadai semanyoka nekurwadziwa kwemudumbu.
- Kunewo mishonga yakakosha yekudzora marwadzo etsinga.
2. Kurapa kwakanangana nechikonzero chechirwere
Aya ndiwo marapirwo makuru anodzivirira chirwere ichi kuti chisanyanya kuipa.
| Nzira yekurapa | Tsananguro |
|---|---|
| Mishonga Inodzora Majini | |
| Zvinodhaka seInotersen, Patsiran, Vutrisiran | Mishonga iyi inoshanda nekuudza jini rinogadzira puroteni yeTTR muchiropa kuti "ridzime." Izvi zvinoderedza kugadzirwa kwepuroteni isina kujairika. Inopihwa sejekiseni. |
| Zvinosimbisa Mapuroteni (Mishonga Inosimbisa Majini) | |
| Mishonga yakaita seTafamidis, Diflunisal | Mishonga iyi inoshanda nekubatanidza puroteni yeTTR inogadzirwa uye kudzivirira kuti isaungane zvisina kunaka. Iyi inogona kutorwa semapiritsi. |
| Kuisirwa Chiropa | |
| Kuvhiya | Sezvo puroteni isina kunaka ichigadzirwa muchiropa, imwe nzira yekurapa ndeyekutsiva chiropa nechimwe chitsva. Asi uku kuvhiyiwa kukuru uye kune njodzi. Kunowanzo kurudzirwa kuvarwere vadiki vari muchikamu chekutanga chechirwere. |
Chiremba wako ndiye achasarudza kuti ndeipi nzira yekurapa yakakunakira. Taura naye pachena nezvesarudzo idzi dzese.
Chikwata chekurapa chinokubatsira
Nekuti chirwere ichi chinokanganisa nhengo dzakawanda mumuviri, uchada rutsigiro rwechikwata chevanachiremba vane hunyanzvi hwakasiyana-siyana.
- Chiremba wepfungwa: Kune matambudziko ane chekuita netsinga.
- Chiremba wemwoyo: Kutarisa nekurapa mashandiro emoyo.
- Chiremba wepfungwa: Kana itsvo dzakanganiswa.
- Chiremba weGastroenterologist: Kune matambudziko emudumbu.
- Chiremba wemaziso: Kune matambudziko emaziso.
- Mupi wezano weMajini: Kupa kunzwisisa nezvechirwere ichi uye kukanganisa kwacho panhaka yekuzvarwa nayo.
- Chiremba weMishonga: Kubatsira nekufamba zvakaoma uye kuchengetedza muviri wakasimba.
Mharidzo Yekuenda Nayo Kumba
- hATTR Amyloidosis chirwere chisingawanzoitiki, chinogara nhaka.
- Kana uine zvinhu zvakaita sekuoma kwemakumbo, kurwadziwa mudumbu nguva dzose, zviratidzo zvemwoyo zvisingatsananguriki, uye kana mumwe munhu mumhuri mako ane nhoroondo yezvirwere izvi, usazvitore sezvisina basa.
- Kuongororwa nekukurumidza uye kurapwa kunogona kubatsira kudzivirira kuti chirwere chisanyanya kuipa.
- Nekuti ichi chirwere chakaoma, zvakakosha kutsvaga rubatsiro kubva kune nyanzvi dzakasiyana-siyana.
- Kana iwe kana mumwe munhu waunoziva aine zviratidzo izvi, tsvaga rubatsiro kubva kuna chiremba ane hunyanzvi nekukasika . Usatya kutaura nezvazvo.
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