Chirwere cheFabry chirwere chisingawanzoitiki, chinoitika nekuda kwekushaikwa kweenzyme inokosha mumuviri wedu. Izvi zvinogona kukanganisa nhengo dzakasiyana dzemuviri, dzakadai semwoyo, itsvo, uye tsinga, nekufamba kwenguva. Saka, kana uinewo chirwere cheFabry, chiremba wako angangodaro akakunyorera mushonga unonzi Agalsidase Beta. Nhasi, tichataura nezvemushonga uyu nenzira iri nyore uye yakajeka.
Mushonga werudzii uyu?
Muchidimbu, Agalsidase Beta (zita rekuti Fabrazyme) mushonga unotsiva enzyme isina kukwana mumuviri wemunhu ane chirwere cheFabry. Mukurapa, izvi zvinonzi 'Enzyme Replacement Therapy' (ERT).
Chinhu chinonyanya kukosha ndechekuti iyi haisi mushonga wechirwere. Zvisinei, kurapwa uku kunogona kubatsira zvikuru kudzora kukuvara kunokonzerwa nechirwere ichi mumuviri uye kuderedza zviratidzo.
Zvinhu zvinonyanya kukosha zvekuudza chiremba wako
Usati watanga kurapwa uku, zvakakosha kuti chiremba azive zvimwe zvinhu nezveutano hwako. Saka, kana uine chimwe chezvinotevera, iva nechokwadi chekuudza chiremba nezvazvo.
- Kana uine chirwere chemwoyo .
- Kana wakambova nechirwere cheAgalsidase Beta, mannitol, kana chero imwe mishonga, chikafu, kana dhayi.
- Kana uine pamuviri , kana kuti uri kutarisira kubata pamuviri munguva pfupi iri kutevera.
- Kana uri amai vari kuyamwisa mwana wako .
Mushonga uyu munoshandiswa sei?
Mushonga uyu unopihwa semushonga unopinzwa mutsinga. Izvi hazvigone kuitwa kumba. Kurapa uku kunongoitwa chete nenyanzvi yehutano yakadzidziswa muchipatara kana kiriniki, iri pasi pekutarisirwa nachiremba.
Kushandiswa kwevana vadiki
Kungwarira kukuru kunofanira kutorwa pakupa mushonga uyu kuvana vadiki. Dzimwe nguva unopihwa kuvana vane makore maviri chete, asi chiremba anoongorora mwana ndiye chete anoita sarudzo.
Ko kana ndikatora mushonga wakawandisa?
Sezvo mushonga uyu uchipihwa muchipatara, uchitarisirwa nenyanzvi, mikana yekuti mushonga uyu upfuure mwero inowanzova mishoma. Zvisinei, kana uchifungidzira kuti pane chaitika, fonera National Poisons Information Centre kuColombo National Hospital nekukasika, kana kuenda kuEmergency Treatment Unit (ETU) iri pedyo.
Chii chaunofanira kuita kana ukarasikirwa nedosi remushonga?
Zvakakosha zvikuru kutora mushonga pazuva rakarongwa uye panguva yakatarwa yekurapwa uku. Kana nekuda kwechimwe chikonzero usingakwanise kuuya kuchipatara pazuva rakarongwa, zivisa chiremba wako kana kiriniki pachine nguva uye ronga rimwe zuva.
Mushonga wacho unouchengetera kupi?
Sezvo mushonga uyu uchipihwa muchipatara kana kukiriniki, hauzobvumidzwe kuutora kumba kana kuuchengeta.
Mimwe mishonga inogona kushanda pamwe chete nemushonga uyu
Mimwe yemishonga yauri kutora inogona kupindirana neAgalsidase Beta. Saka, zvakakosha kuudza chiremba wako nezvemishonga yese yauri kutora (yakanyorwa nachiremba, inotengeswa pasina kunyorerwa chiremba, mishonga yemishonga, mavhitamini). Kunyanya kana uri kutora chero ipi yemishonga inotevera:
- amiodarone
- chloroquine
- gentamicin
- Hydroxychloroquine
- monobenzone
Rondedzero iyi haisanganisiri mishonga yese inogona kushandiswa, saka zvakachengeteka kuudza chiremba wako nezvese zvauri kutora.
Ndezvipi zvingakonzera migumisiro yakaipa?
Kufanana nemushonga upi zvawo, uyu unogona kuva nemigumisiro yakaipa. Mimwe yakakomba, mimwe inowanzoonekwa. Zvakakosha kuziva izvi.
| Mhedzisiro yedivi | Tsananguro |
|---|---|
| Migumisiro inofanira kuziviswa kuna chiremba kana nesi nekukasika | |
| Kurwara Kwakanyanya | Mapundu paganda, kuvaviwa, kuzvimba kwechiso, miromo kana rurimi. |
| Kuoma kufema | Kufema zvishoma, kufema nekukurumidza. |
| Kurwadziwa kwechipfuva kana kuomarara | Kunzwa sekunge moyo wako uri kudzvinyirirwa. |
| Kurova kwemoyo | Kunzwa sekuti moyo wako uri kurova nekukurumidza kana kuti kurova kwemoyo wako kuri kuchinja. |
| Zvimwe | Dzungu rakakomba, kuzvimba kwemaoko kana tsoka, kuora mwoyo. |
| Migumisiro isingawanzova yakanyanya (asi inofanira kutaurwa kuna chiremba kana ikaramba iripo) | |
| Zvaunonzwa kana uchibaya mushonga | Kunzwa fivha kana kutonhora. |
| Kurwadziwa kwakajairika | Kurwadziwa kwemuviri, musoro. |
| Matambudziko ekugaya chikafu | Kusvotwa, kurutsa, kurwadziwa mudumbu kana kusagadzikana. |
| Pfungwa | Kunzwa kusagadzikana, kunetseka. |
Rondedzero iyi haina migumisiro yese inogona kuitika. Kana ukasangana nechimwe chinhu chakasiyana, taura nachiremba wako nezvazvo.
Mharidzo Yekuenda Nayo Kumba
- Agalsidase Beta (Fabrazyme) mushonga wekutsiva ma enzyme echirwere cheFabry. Kunyangwe isingarape chirwere chose, inogona kubatsira zvikuru kudzora zviratidzo nematambudziko.
- Mushonga uyu unopinzwa muchipatara netsinga, saka zvakakosha kuti munhu arapwe nenguva.
- Unofanira kuudza chiremba wako nezvemimwe mishonga yauri kutora, chero allergies yaunayo, uye kana uri nepamuviri kana kuti uchiyamwisa.
- Kana ukaona zviratidzo zvakaita sekuoma kufema, kurwadziwa pachipfuva, kana mapundu paganda panguva yekubaya mushonga kana nguva pfupi mushure mekuubaya, taurira chiremba wako kana mukoti wako nekukasika.
- Kana muine mibvunzo nezvemushonga uyu, musatya kana kuzeza kubvunza chiremba wenyu.
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