Unganetseka zvikuru paunoona kuti une chirwere chemajini chisingawanzoitiki chinonzi hATTR amyloidosis. Chaizvoizvo chirwere chisingawanzoitiki. Vanhu 50,000 chete pasi rose vane chirwere ichi. Zvakajairika kuti unzwe kutya uye kuvhiringidzika paunonzwa nezvazvo. Zvichitaurwa zviri nyore, chirwere ichi chinokonzerwa nekuchinja kwemajini kunonzi TTR mumuviri wedu. Nekuda kweizvozvo, mhando isina kujairika yemapuroteni anonzi amyloids inoiswa munhengo dzakadai semwoyo wedu, itsvo, tsinga, uye gastrointestinal system. Zvadaro nhengo idzodzo hadzigone kushanda zvakanaka. Paunoenda kunoona chiremba kekutanga, achakubvunza mibvunzo yakawanda. Zvakakosha kugadzirira pachine nguva. Ipapo iwe nachiremba munogona kusarudza kurapwa kwakanakira iwe.
Unogadzirira sei usati waenda kunoona chiremba?
Zvakakodzera kuteerera pfungwa idzi usati waenda kuna chiremba.
Ziva nhoroondo yezveutano hwemhuri yako nemazvo
hATTR amyloidosis chirwere chemajini. Panyaya dzezvekurapa, chirwere chinonzi "autosomal dominant". Izvi zvinoreva kuti kana mumwe wevabereki vako aine gene mutation inokonzera chirwere ichi, une mukana we50% wekuchigara nhaka. Kana mumwe wevabereki vako, munin'ina, kana mwana akaonekwa aine chirwere ichi, zvakakosha kuti uedzerwe majini, kunyangwe usina zviratidzo.
Yeuka, kungoti mumwe munhu mumhuri mako ane chirwere ichi hazvirevi kuti une mukana wekuwana chirwere ichi zvizere. Asi kuziva kana uine jini iri kunogona kukubatsira kuti uwane kurapwa .
Tora mishumo yese yebvunzo yawakaita.
Kana wakamboongororwa majini kuti utarise kuchinja kwemajini eTTR, udza chiremba wako nezvazvo. Uyewo, kana zvabuda muongororo yako zvikaratidza kuti une jini iri, chiremba wako achakurudzira mimwe miedzo. Izvi zvinodaro nekuti chirwere chehATTR chinogona kukanganisawo dzimwe nhengo dzemuviri, dzakadai semwoyo, chiropa, neitsvo. Kana wakamboongororwa moyo (echocardiogram) kana kuongororwa ropa, iva nechokwadi chekuunza mishumo yese iyoyo.
Uyai nerunyorwa rwemishonga yamuri kunwa.
Chiremba wako achada kuziva nezvemishonga yese yaunotora. Izvi zvinosanganisira kwete chete iyo yawakanyorerwa nachiremba wako, asiwo chero mishonga inonyaradza marwadzo, mavhitamini, nezvimwe zvinovaka muviri zvaunotora usingabhadhariswi nechiremba.
Mibvunzo yaungabvunzwa nachiremba
Kugadzirira kupindura mibvunzo yako kuchakubatsira chiremba wako kusarudza marapirwo akanakira iwe. Zvichakupawo nguva yekubvunza chero mibvunzo yaungave nayo.
Heino pfupiso yezvaungabvunzwa nachiremba.
| Nzvimbo yekubvunza mibvunzo | Zvaungabvunzwa uye zvaunofanira kuziva |
|---|---|
| Nhoroondo yezvekurapa yemhuri | "Pane mumwe munhu mumhuri mako ane hATTR here?" vanobvunza. Pamwe mumwe munhu mumhuri mako akambova nechirwere chemwoyo, progressive neuropathy , carpal tunnel syndrome , kana matambudziko emudumbu. Pamwe akambova nehATTR asi aisazviziva. Saka vaudze ruzivo urwu. |
| Kuongororwa kwemajini uye kuongororwa kwezvirwere | "Wakamboongororwa majini here?" vanobvunza. HATTR inogona kuoma kuiongorora nekuti inokanganisa nhengo dzakawanda dzemuviri. Chiremba wako anogona kukurudzira bvunzo dzinotevera: biopsy (kutora chidimbu chenyama kuti chiongororwe), kuongororwa kweropa, echocardiogram kana cardiac MRI yekutarisa moyo wako, uye bvunzo dzekufambisa tsinga kuti dzione mashandiro etsinga. |
| Zviratidzo zvine chekuita nemoyo | "Une zviratidzo zvakaita sekurova kwemoyo, kufema zvishoma, kuoma kwekurovedza muviri, kana kuzvimba mumakumbo ako here?" hATTR inogona kukonzera mapuroteni aya kuungana mumoyo, zvichikonzera kurwara kwemoyo, chirwere chemwoyo, kana kukora kwetsandanyama dzemwoyo (hypertrophic cardiomyopathy) . Kana uine zviratidzo izvi, uchatumirwa kuna chiremba wemwoyo nekukasika. |
| Matambudziko ekuona | "Une shanduko here mukuona kwako, dzakadai sedzinoyerera?" Inenge 20% yekuchinja kwemajini eTTR kunokanganisa maziso. Chero shanduko mukuona inofanira kuongororwa nachiremba wemaziso . |
| Matambudziko ekufamba uye tsinga | "Uri kunetseka nekufamba here?" Chimwe chezviratidzo zvekutanga uye zvakajairika zvechirwere cheHATTR kukuvara kwetsinga dziri mumaoko ako nemakumbo (peripheral neuropathy) . Izvi zvinogona kukonzera zviratidzo zvakaita sekurwadziwa, kusanzwa, uye kukwenya. Kana izvi zviri kukanganisa hupenyu hwako, ungangoda kufunga nezvezvinhu zvakaita sekurapa kwemabasa . |
| Matambudziko ehurongwa hwetsinga dzinozvitonga | "Une dikita rakawandisa here, uchichinjana manyoka nekuzvimba, kana kuti unoomerwa nekudzora weti yako here?" Aya matambudziko ane autonomic nervous system, iyo inodzora zvinhu zvakaita sekurova kwemoyo, BP, uye kugaya chikafu izvo zvatisingakwanise kudzora. Kuva nezviratidzo izvi kunogona kuva chiratidzo chekuti chirwere chako cheHATTR chiri kuramba chichiipa. |
Chiremba anotaurawo nezvenzira dzekurapa nadzo.
Mushure mekusimbisa mamiriro ako ezvinhu, chiremba achakurukura newe nzira dzekurapa nadzo.
Wakatotora mushonga wako here?
Kune mishonga yakati wandei inotenderwa pari zvino kudzora hATTR uye kunonotsa kufambira mberi kwayo. Mienzaniso inosanganisira ` Eplontersen (Wainua)`, `inotersen (Tegsedi)`, `patisiran (Onpattro)`, `vutrisiran (Amvuttra)`, `tafamidis (Vyndamax)`, uye `tafamidis meglumine (Vyndaqel)`. Zvakakosha kuudza chiremba wako kana wakamboshandisa chero yemishonga iyi kare, ingave yakakubatsira, kana kuti yakakonzera migumisiro yakaipa.
Unofungei nezvekuisirwa chiropa?
Kwemakumi emakore, mushonga wakanakisisa we hATTR waive wekuisirwa chiropa. Asi unouya nenjodzi huru yematambudziko, kunyanya matambudziko emwoyo. Tsvagiridzo itsva inoratidza kuti mimwe mishonga mitsva inogona kushanda sekuisa chiropa. Saka unogona kutaura nachiremba wako nezvezvakanakira nekuipira kwekuvhiyiwa uku nedzimwe nzira dzekurapa.
Ungade here kutora chikamu mukuyedzwa kwekiriniki?
Vanachiremba vanogara vachitsvaga nzira dziri nani dzekutarisira varwere vehATTR. Imwe nzira yekuita izvi ndeyekuburikidza nemiedzo yekiriniki. Mushonga wese unotenderwa nhasi wakaedzwa nenzira iyi. Uyu mukana wakanaka wekuwana mushonga mutsva usati wawanikwa kune veruzhinji. Asi kune dzimwe njodzi. Unogona kubvunza chiremba wako nezveizvi zvakare.
Mharidzo Yekuenda Nayo Kumba
- HATTR amyloidosis chirwere chisingawanzoitiki, chinogara nhaka. Zvakajairika kuti unzwe kunetseka paunonzwa nezvazvo.
- Paunoenda kunoona chiremba, taura nezvenhoroondo yemhuri yako yezveutano, zvabuda muongororo yawakaita, uye runyorwa rwemishonga yauri kutora.
- Udza chiremba wako nezvezviratidzo zvako (kurwadziwa muchipfuva, kunetseka kufema, kusanzwa simba mumakumbo ako, kuchinja kwekuona kwako) usingavanzi chero chinhu.
- Taura pachena nachiremba wako nezvesarudzo dzekurapa (mishonga, kuvhiyiwa, tsvakurudzo yezvekurapa) uye bvunza mibvunzo yese yaunayo.
- Nekuongorora chirwere nemazvo uye kugamuchira kurapwa kwakakodzera, unogona kurarama nechirwere ichi zvinobudirira.
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