Dzimwe nguva unonzwa kusanzwa simba mumakumbo ako here? Une kurwadziwa mudumbu here kana kuti dzungu paunomira? Kunyangwe izvi zvingaita sezvinhu zvakajairika, dzimwe nguva zvakavanzika shure kweizvi zvinogona kunge chirwere chisingawanzoitiki icho vanhu vazhinji vasati vatombonzwa nezvacho, uye chinopfuudzwa nezvizvarwa. Nhasi tichataura nezvechimwe chirwere chakadai, hATTR amyloidosis . Kunyangwe iyi iri nyaya yakaoma, ngatiinzwisise zviri nyore.
Chii chinonzi hATTR Amyloidosis?
Zvichitaurwa zviri nyore, hATTR (Hereditary Transthyretin Amyloidosis) chirwere chisingawanzoitiki chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe uye chinokura zvishoma nezvishoma nekufamba kwenguva. Chikonzero chacho kuchinja kwemajini edu, kunonzi mutation.
Fungidzira kuti zvese zviri mumuviri wedu zvinodzorwa nemajini. Kune jini rinonzi TTR muchiropa chedu. Kana paine shanduko mujini iri, puroteni inonzi 'transthyretin' inogadzirwa nayo inovawo nechimiro chisina kujairika, chisina kunaka.
Mapuroteni aya asina chimiro chakanaka anoungana pamwe chete oumba zvidimbu zvinonzi ' amyloid ' mutsinga dzemuviri wedu nedzimwe nhengo dzakasiyana-siyana. Kungofanana nevhu nengura zvinovhara pombi yemvura, zvidimbu izvi zveamyloid zvinokuvadza nhengo idzodzo.
Dambudziko iri rinokonzera polyneuropathy, inova kukuvara kwetsinga dzinobva kuuropi dzichienda kune dzimwe nhengo dzemuviri. Kunyangwe iri dambudziko rakakomba, nekurapwa kwakakodzera, zviratidzo zvinogona kudzorwa uye hupenyu hunogona kuenderera mberi.
Ndezvipi zviratidzo zvechirwere chehaTTR?
Nekuti chirwere cheHATTR chinokanganisa nhengo dzakawanda mumuviri, zviratidzo zvacho zvakasiyana-siyana. Dzimwe nguva zviratidzo izvi zvakafanana nezvezvimwe zvirwere zvakajairika, saka zvinogona kuoma kuona chirwere chacho.
Ona tafura iri pazasi kuti uone kuti zviratidzo izvi chii.
| Sisitimu/nhengo yakakanganiswa | Zviratidzo zvinogona kuitika |
|---|---|
| Sisitimu Yetsinga | Kunzwa kusanzwa, kukwenya, kurwadziwa, uye kurasikirwa nemanzwiro mumaoko netsoka. Carpal Tunnel Syndrome. Kuomerwa nekufamba. |
| Mwoyo & Kutenderera Kweropa | Kurova kwemoyo kusina kurongeka, mwoyo wakakura, kurwara nemoyo. Kuderera kweropa uye kupera simba kana wakamira. |
| Sisitimu Yekugaya | Kuchinja manyoka uye kuzvimba pasina chikonzero. Kunzwa kuguta kunyangwe mushure mekudya zvishoma. Kudzikira huremu. |
| Itsvo & Sisitimu Yeweti | Kuoma kwekuita weti. Kusashanda zvakanaka kweitsvo. |
| Maziso | Maziso akaoma, kumanikidzwa kwakanyanya kwemaziso (glaucoma), kuona zvisipo. |
Yeuka kuti zviratidzo izvi zvakawanda zvinogona kutyisidzira hupenyu, kunyanya matambudziko emwoyo. Saka kana uine chimwe chezviratidzo izvi, kunyanya kana mumwe munhu mumhuri mako akamborwara nechirwere ichi, enda kuna chiremba nekukasika.
Chirwere cheHATTR chinoonekwa sei?
Nekuti chirwere ichi hachiwanzoitiki uye zviratidzo zvacho zvakafanana nezvimwe zvirwere, zvinogona kuoma kuona chirwere ichi. Asi chiremba anotarisa pane zvimwe zvinhu.
- Nhoroondo yezveutano hwemhuri : Bvunza kana paine munhu mumhuri yako akamborwara nemoyo, kukora tsandanyama dzemwoyo, kana zvimwe zvirwere zvetsinga.
- Kubvunza nezvezviratidzo: Kubvunza kana uine zviratidzo zvataurwa pamusoro apa.
- Kuongororwa Kwemajini: Muenzaniso weropa kana masero eganda anoongororwa kuti vaone kana paine shanduko mujini reTTR. Iyi ndiyo nzira chaiyo yekusimbisa chirwere.
- Kuongororwa kweTishu: Mafuta mashoma anobva pasi peganda redumbu anotorwa netsono diki uye anoongororwa nemaikorosikopu kuti aone kana paine amyloid deposits. Musazvidya mwoyo, uku hakusi kuvhiyiwa kukuru uye kunogona kuitwa nekukurumidza.
- Mimwe miedzo:Kuongororwa kweropa neweti, kuongororwa kwebasa retsinga, uye bvunzo dzakadai seECG neEcho dzekutarisa mashandiro emoyo zvinogona kuitwawo.
Ndeipi mishonga yekurapa hATTR?
Pane zvinangwa zvikuru zviviri pakurapa chirwere cheHATTR: Chimwe ndechekudzora zviratidzo, uye chimwe ndechekuderedza kana kumisa kugadzirwa uye kuiswa kweprotein isina kunaka mumuviri.
Kurapa kwezviratidzo
- Mishonga inopihwa yematambudziko emwoyo uye kuungana kwemvura mumuviri .
- Mishonga inopiwa yezvinetso zvekugaya chikafu zvakaita semanyoka uye kuvimbiwa.
- Mishonga inoshandiswa kudzora marwadzo etsinga.
Kurapa kwakanangana nechikonzero chechirwere
Aya ndiwo marapirwo makuru anogona kuchinja mafambiro echirwere.
- Mishonga Inodzora Kutapudza Majena: Mishonga iyi inoshanda nekumisa jini reTTR riri muchiropa kuti risagadzire mapuroteni asiri iwo. `Inotersen`, `Patisiran`, `Vutrisiran` ndedzimwe dzemishonga iyi. Mimwe yacho inowanikwa sejekiseni vhiki rega rega, nepo mimwe ichipinzwa netsinga mavhiki matatu ega ega.
- Mishonga Inosimbisa Majini: Mishonga iyi inoshanda nekudzivirira mapuroteni eTTR akasanganiswa kuti asaungane pamwe chete oita amyloid deposits. `Tafamidis` ne`Diflunisal` mishonga iri mukirasi iyi.
- Kuisirwa Chiropa: Sezvo puroteni isina kunaka ichigadzirwa muchiropa, kuisirwa chiropa kunogona kudzora kupararira kwechirwere. Zvisinei, uku kuvhiyiwa kukuru. Uye kunobudirira chete pakutanga kwechirwere.
Chikwata chekurapa chinokubatsira
Nekuti chirwere ichi chinokanganisa nhengo dzakawanda dzemuviri, uchada rubatsiro rwenyanzvi dzakawanda.
| Chiremba ane hunyanzvi | Rubatsiro rwavanowana |
|---|---|
| Chiremba wetsinga | Kugadzirisa kukuvara kwetsinga nekurwadziwa. |
| Chiremba wemwoyo | Kutarisa migumisiro pamoyo uye kupa kurapwa kwakakodzera. |
| Chiremba wezvirwere zvetsinga | Kuongorora mashandiro eitsvo uye kubatsira kudzivirira itsvo. |
| Mupi wezano weMajini | Tsanangura kuti chirwere ichi chinokubata sei iwe nemhuri yako. |
| Chiremba weMiviri | Kupa maekisesaizi ekuderedza matambudziko ekufamba nekufamba kwemuviri. |
Mharidzo Yekuenda Nayo Kumba
- hATTR chirwere chakakomba chemajini chinokura nekufamba kwenguva.
- Kana uine zviratidzo zvakaita sekuoma kwemakumbo ako, chirwere chemwoyo, kana dumbu rako, kunyanya kana mumwe munhu mumhuri mako akambova nechirwere ichi, usatore sechisina basa.
- Kana chirwere ichi chikaonekwa nekukurumidza, mhedzisiro yekurapwa inova nani.
- Iye zvino kwava nemishonga inoshanda zvikuru uye nzira dzekurapa chirwere ichi. Saka hapana chikonzero chekutya.
- Kana muine mibvunzo nezvechirwere ichi, musatya kutaura nachiremba wenyu.
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