Zuva rekupedzisira raKukadzi gore rega rega iInternational Day of Rare Diseases.Sezvinoreva zita rayo, Rare zvirwere zvinoreva zvirwere zvine chiitiko chakaderera kwazvo.Maererano netsanangudzo yeWHO, zvirwere zvisingawanzoitiki zvinokwana 0.65 ‰ ~ 1 ‰ yehuwandu hwevanhu.Muzvirwere zvisingawanzo, mamota asingawanzo anotora chikamu chidiki, uye mamota ane chiitiko chisingasviki 6/100000 anogona kunzi "rare tumors".
Kasiri kare, FasterCures Non-invasive Cancer Center yakagamuchira mudzidzi wepakoreji ane makore makumi maviri nerimwe Xiaoxiao aine bundu rakazara 25 cm mumuviri wake.Ichi chirwere chisingawanzozivikanwa chinonzi "Ewing's sarcoma", uye vazhinji vevarwere vari pakati pemakore gumi ne30.Sezvo bundu racho rakakura uye rakashata, mhuri yake yakafunga kuuya kuBeijing kuzotsvaga kurapwa.
Muna 2019, musikana ane makore gumi nemasere aiwanzonzwa chipfuva nemarwadzo kumashure uye akanzwa bhegi.Mhuri yake yakamuendesa kuchipatara kunoongororwa, uye pakanga pasina chikanganiso.Akafunga kuti zvimwe akanga aneta nezvidzidzo zvake zvekusekondari, akabva aisa plaster achiita seanzwa kurerukirwa.Pashure paizvozvo, nyaya yacho yakasiyiwa.
Kwapera gore, Xiaoxiao akanzwa kurwadziwa kukuru uye akaonekwa aine Ewing's sarcoma mukuongororwa akadzokororwa.zvipatara zvakawanda zvakakurudzira kuvhiyiwa mushure mechemotherapy."Hatinzwe kunyaradzwa, uye tisina chivimbo mukurapa chirwere ichi," akadaro Xiaoxiao akasununguka.Aive azere nekutya chemotherapy uye kuvhiyiwa, uye pakupedzisira akasarudza kusadzivirirwa kwemasero uye kurapwa kwechinyakare Chinese mushonga.
Muna 2021, kuongororwazve kwakaratidza kuti bundu rakawedzera kusvika masendimita makumi maviri nemashanu, uye marwadzo ekurudyi kumashure aive akanyanya kupfuura kare.Xiaoxiao akatanga kutora painkiller ibuprofen kuti abvise marwadzo.
Kana pasina kurapwa kunoshanda, mamiriro eXiaoxiao achange aine njodzi, mhuri inofanirwa kuisa mwoyo yavo mumuromo kuti irarame, kunetseka nezverufu kuchabvisa Xiaoxiao chero nguva.
"Sei chirwere ichi chisingawanzoitiki chichiitika kwatiri?"
Sokutaura kunoita chirevo, dutu ringamuka richibva kudenga kwakajeka, zvinozoitika zvomunhu hazvina chokwadi semamiriro okunze.
Hapana anogona kufanotaura zvichaitika kumuviri wake.Asi hupenyu hwese hune kodzero yekurarama.
Maruva ari muzera rimwe chete haafaniri kusvava nokukurumidza kudaro!
Xiaoxiao, achifamba pakati petariro uye kuodzwa mwoyo, akauya kuBeijing ndokusarudza kurapwa kusingapindike.
Focused ultrasound ablation yagara iri nyaya yechirwere chakafanana ichi, uye kuponeswa kwemakumbo kwakabudirira kuitwa kune varwere vane mamota emapfupa akatarisana nekudimburwa, ari mudiki pane Xiaoxiao.
Kuvhiya kwacho kwakaitwa nenguva, nekuti oparesheni iyi yakaitwa munhu akasvinura, Xiaoxiao akachema zvinyoronyoro, kana kuchema-chema nekusarongeka kwaizoitika, kana kutenda Mwari nekumuvhurira rimwe gonhi.Kuchema kwake kwairatidza kuti kwaiva kusunungura upenyu, asi sezvineiwo, mugumisiro wokuvhiyiwa musi iwoyo wakanga wakanaka, uye tariro youpenyu yakanga iripo.
Sekureva kwavanachiremba, zvinyoro zvinyoro sarcoma ibundu risingawanzo kuwanikwa rine chiitiko chisingasviki 1/100000.Huwandu hwenyaya nyowani muChina huri pasi pemakumi mana, 000 gore rega rega.Kamwe metastasis inoitika, nguva yepakati yekupona inenge gore rimwe chete.
"Zvinyoro zvinyoro sarcomas zvinogona kuitika munhengo dzese dzemuviri, kunyangwe ganda."
Vanachiremba vakati kutanga kwechirwere kwakavanzwa, uye zviratidzo zvinowirirana zvichaonekwa chete kana bundu rinodzvinyirirwa pane dzimwe nhengo dzakapoteredza.Semuenzaniso, murwere ane nyoro nyoro sarcoma yemumhino ari kurapwa muwadhi yedhipatimendi rechirwere chisingawanzo.Nekuda kwekuti mhino iyi haina kupora kwenguva yakareba, ongororo yeCT yakawana bundu.
"Zvisinei, zviratidzo zvinoenderana nazvo hazvina kujairika, sekunge mhino yakavharika, maitiro emunhu wese anofanirwa kunge ari dzihwa, uye hapana angafunga nezvebundu, zvinoreva kuti kunyangwe mushure mekuratidza zviratidzo, murwere anogona kusaona chiremba. nguva.
Iyo nguva yekupona yeakapfava tishu sarcoma ine chekuita nekuita.Pane imwe nguva metastasis yemapfupa inoitika, ndiko kuti, kunonoka, nguva yekupona kwepakati inenge inenge gore rimwe chete. "
Chen Qian, chiremba mukuru kubva kuFasterCures Center, akataura kuti matishu akapfava sarcomas anowanzo kuitika muvachiri kuyaruka, nekuti panguva iyi, mhasuru nemapfupa ari padanho rekufara uye kukura, uye imwe abnormal hyperplasia inogona kuitika mukumhanya kwesero. kuwanda.
Vamwe vanogona kunge vaine benign hyperplasia kana precancerous maronda pakutanga, asi pasina kutariswa nenguva uye kurapwa kwezvikonzero zvakasiyana, zvinogona kupedzisira zvatungamira kune yakapfava tishu sarcoma.
"Kazhinji, huwandu hwekurapa bundu hwevachiri kuyaruka hwakakwira zvakanyanya kupfuura hwevakuru, izvo zvinoenderana nekuonekwa kwekutanga, kuongororwa nekukasira kurapwa, asi nhamba yakati wandei yevechiri kuyaruka vanowana bundu racho ranonoka uye vanorasikirwa nemukana wekurapa kwakanyanya. , saka chero zvakadaro, matatu 'kutanga' akakosha kwazvo."
Chen Qian akayambira kuti vanhu vazhinji vezera repakati nevakweguru vakaita tsika yekuongororwa muviri nguva nenguva, asi kuchine nhamba yakati wandei yevechidiki vasina kudaro.
“Vabereki vazhinji vari kushamisika mushure mekunge vana vavo vabatwa nebundu.
Kuongororwa kwemuviri wechikoro zvinhu zvakakosha, kutaura zvazviri, kunyange kuongororwa kwemuviri kwegore negore kunogona kungoita kuongororwa kwakashata, kunowanikwa kusina kujairika uye kuongorora kwakanaka kunogona kuwana dambudziko. "
Naizvozvo, vangave vabereki vevechiri kuyaruka kana vechidiki vane makore makumi maviri nemakumi matatu, vanofanirwa kutarisisa kuongororwa kwemuviri, havatore chimiro chepamusoro, asi bvunza chiremba kuti asarudze mapurojekiti nenzira yakanangwa uye yakazara.
Nguva yekutumira: Kurume-09-2023