Wakambonzwa nezvedambudziko riri mumhuri yako, kunyanya mwana mudiki, apo tsandanyama dzemusana dzinopera simba zvishoma nezvishoma? Mukurapa, tinodana izvi kuti Spinal Muscular Atrophy (SMA) . MuchiSinhala, kuora kwetsandanyama kunobatanidzwa nemusana. Ichi chirwere chemajini chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe. Ndokusaka kushaya simba kwetsandanyama uku kuchigona kukanganisa kwete mabasa atinowanzoita zuva nezuva, akadai sekubata musoro wedu wakatwasuka, kugara pasina rubatsiro, kufamba, kumedza chikafu, asiwo kufema. Saka, mushonga mutsva unonwiwa unopiwa semushonga wechirwere ichi cheSMA unonzi Evrysdi (risdiplam) . Nhasi, tichataura nezvemushonga uyu, mashandisirwo awo, mabhenefiti awo, uye migumisiro yaunofanira kuziva nezvawo.
Nhanganyaya pfupi yechirwere cheSMA uye mhando dzacho
Tisati tataura nezvemushonga weEvrysdi, ngatinzwisisei zvishoma nezveSMA. Chirwere ichi chakakamurwa kuita mhando dzakasiyana-siyana zvichienderana nezera rinotanga kuoneka zviratidzo.
- Kutanga kweSMA mucheche (Type 1): Iyi ndiyo mhando yakanyanya kuipa. Zviratidzo zvinowanzoonekwa mucheche, vasati vasvitsa mwedzi mitanhatu.
- SMA inotanga gare gare (Rudzi rwechipiri nerwechitatu): Murudzi urwu, zviratidzo zvinotanga kuoneka muhudiki kana kuyaruka.
- SMA yemunhu mukuru (Rudzi rwechina): Muchiitiko ichi, zviratidzo zvinongoonekwa chete kana munhu akura.
Mushonga weEvrysdi unoshandiswa kurapa marudzi ese aya. Unopiwawo kuvanhu vakaonekwa vaine chirwere cheSMA kuburikidza nekuongororwa kwemajini asi vasati vava nezviratidzo (pre-symptomatic).
Ungashandisa sei mushonga weEvrysdi?
Ichi chikamu chakakosha zvikuru, nekuti kushandisa mushonga nemazvo kunokanganisa zvakananga mhedzisiro .
Muchawana mushonga uyu kubva ku pharmacy chaiyo, uri muchimiro chemvura. Kana mukazombowana bhodhoro rine chinhu chinoita sehupfu, musasanganisa mozonwa. Kana izvi zvikaitika, kurumidzai kubata nzvimbo yamakapihwa mushonga wacho kana chiremba wenyu.
Maitiro ekugadzirira mushonga
Chiremba wako achakuudza kuti mushonga unofanira kutorwa zvakadini uye kuti unofanira kuyera sei uye kuugadzirira sei. Bhodhoro remushonga rinofanira kuuya nekavha, adapta yebhodhoro, uye sirinji dzakawanda dzinogona kushandiswazve. Kana chimwe chezvinhu izvi chisipo kana kuti chakatyoka, taura nachiremba wako usati watora mushonga.
- Zvakakosha kutora mushonga uyu panguva imwe chete zuva nezuva .
- Nguva yakanakisisa yekunwa mushonga mushure mekudya . Kana ari mwana mucheche,Ipai mushure mekunge mapedza kuyamwisa .
- Usambosanganisa mushonga uyu nemukaka wemukaka kana chero rumwe rudzi rwemukaka, senge mukaka wemombe.
- Mushure mekutora mushonga, inwa mvura kuti uve nechokwadi chekuti wamedzwa zvachose.
- Vamwe vanhu vanopiwa mushonga uyu kuburikidza nechubhu yekudyisa . Kana zvakadaro, ungangoda kusuka chubhu nemvura mushure mekupa mushonga.
Chinonyanya kukosha: Shandisa sirinji yawakapihwa kuti uverenge mushonga. Kana ikarasika kana kuti yatyoka, bvunza chiremba wako usati watenga imwe itsva. Sirinji yashandiswa inogona kugezwa, kucheneswa, uye kushandiswa mangwana acho.
Zvinhu zvekungwarira paunenge uchitora mushonga
Mushure mekudhonza mushonga musirinji, unofanira kuunwa mukati memaminitsi mashanu . Kana usingakwanise kuunwa mukati menguva iyoyo, rasa mushonga wacho wogadzira mushonga mutsva.
Uyewo, musarega mushonga uyu uchisvika paganda renyu kana mumaziso enyu. Kana ukapinda mumaziso enyu, gezai zvakanaka nesipo nemvura. Kana ukapinda mumaziso enyu, gezai maziso enyu zvakanaka nemvura yakachena. Musasanganisa mabhodhoro maviri emushonga kuti muwane mushonga mumwe chete chero chikonzero chipi zvacho.
Kubudirira kwemushonga uyu kwakaedzwa sei?
Mushonga usati wasvika kumusika, zvidzidzo zvakawanda zvekiriniki zvinoitwa kuti zvionekwe kuti unoshanda uye wakachengeteka zvakadii. Mushonga weEvrysdi wakamboedzwawo kakawanda. Ngatimbozvitarisai zviri nyore.
| Rudzi rwekuyedza | Avo vakapinda mubvunzo | Mhedzisiro huru yakaonekwa |
|---|---|---|
| SMA yevana vacheche | Vacheche makumi mashanu nemasere, vane mwedzi mitanhatu yekuberekwa, vane Type 1 SMA. | Mushure memwedzi gumi nemiviri yekutora mushonga uyu, chikamu chimwe muzvitatu chakakwanisa kugara kwemasekonzi mashanu pasina rubatsiro. Mushure memwedzi makumi maviri nemana, vanenge 60% vakakwanisa kugara vakadaro. |
| SMA inotanga gare gare | Vana nevakuru zana nemakumi masere vane makore 2-25 vane chirwere cheSMA cherudzi rwechipiri kana rwechitatu. (Vamwe vakapihwa mushonga weEvrysdi, vamwe vakapihwa mushonga we placebo.) | Kushanda kwemuviri kwakavandudza kune avo vakatora Evrysdi, ukuwo kwakadzikira kune avo vakatora placebo. |
| Avo vasina kuratidza zviratidzo (Pre-symptomatic) | Vacheche makumi maviri nevatanhatu vari pasi pemavhiki matanhatu vakaonekwa vaine chirwere cheSMA kuburikidza nekuongororwa kwemajini, asi vasina zviratidzo. | Pakupera kwemwedzi gumi nemiviri, 96% vakakwanisa kugara kwemasekonzi mashanu vasina rubatsiro. 81% vakakwanisa kugara kwemasekonzi makumi matatu. |
Yeukai, izvi zvabuda muongororo. Zvamuchawana iwe kana mwana wenyu zvingasiyana. Zvinosiyana zvichienderana nemamiriro emuviri wemunhu wega wega.
Ndezvipi migumisiro yeEvrysdi?
Sezvinoita chero mushonga upi zvawo, Evrysdi inogona kukonzera mamwe matambudziko madiki. Anonyanya kuitika ndeaya:
- Kupindwa nechando
- Manyoka
- Mapundu eganda kana kuvaviwa
Aya ndiwo migumisiro yakajairika, asi kunewo mimwe migumisiro inogona kuitika.
Chii chekuita kana migumisiro yakaipa ikaitika?
Muzviitiko zvakaita sefivha, unogona kutaura nachiremba wako wopihwa paracetamol yakakodzera.
Kana dumbu rako risina kugadzikana, chinhu chakakosha ndechekudzivirira kupera mvura mumuviri.
- Vape mvura yakawanda yekunwa.
- Kana ari mwana, gara uchiyamwisa.
- Zvakanaka zvikuru kupa vana vadiki chinwiwa chakaita seJeevani (mvura inonwiwa nemuromo) .
- Inwa mvura yakawanda.
Chinhu chinonyanya kukosha ndechekuzivisa chiremba wako nekukurumidza nezvezviratidzo zvinokunetsa kana zvinoita sezvisina kujairika. Usangozvirapa wega.
Evrysdi yakachengeteka here panguva yekuzvitakura uye yekuyamwisa?
Iyi inyaya yakakosha zvikuru.
- Kana uine pamuviri, uchironga kuva nepamuviri, kana kuti uchiyamwisa, iva nechokwadi chekuudza chiremba wako usati watanga Evrysdi.
- Mafungiro aripo pari zvino ndeekuti mushonga weEvrysdi unogona kukuvadza mwana ari mudumbu.
- Saka, usati watanga mushonga uyu, unofanira kutora bvunzo yekuzvitakura kuti uve nechokwadi chekuti hauna pamuviri.
- Unofanira kushandisa nzira yekudzivirira pamuviri inoshanda zvikuru paunenge uchitora piritsi uye kwemwedzi mumwe chete mushure mekurega kushandisa piritsi.
Sununguka kukurukura chero mibvunzo kana zvinokunetsa nezvenyaya iyi nachiremba wako.
Mharidzo Yekuenda Nayo Kumba
- Kupera kweMusungo weMusana (SMA) chirwere chinokonzerwa nemajini chinokonzera kushaya simba kwetsandanyama. Evrysdi mushonga wemvura unonwiwa wechirwere ichi.
- Unofanira kunwa mushonga wacho sezvawaudzwa nachiremba wako, panguva imwe chete zuva nezuva, zviri nani mushure mekudya.
- Usasanganisa mushonga nezvigadzirwa zvemukaka. Inwa mvura mushure mekushandisa mushonga.
- Migumisiro yakadai sefivha, kurwadziwa mudumbu, uye mapundu paganda zvinogona kuitika. Udza chiremba wako nezvezviratidzo zvinonetsa.
- Kana uine pamuviri, uchiedza kuva nepamuviri, kana kuti uchiyamwisa, iva nechokwadi chekukurukura nachiremba wako nezvekutora mushonga uyu.
- Taura pachena nachiremba wako nezvemibvunzo kana zvinokunetsa. Ndiyo nzvimbo yakanakisisa yekuwana ruzivo rwakarurama.
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