Ndinonzwisisa kuti zvinorema uye zvinotyisa sei kana chiremba wako akakuudza kuti mwana wako ane Duchenne muscular dystrophy (DMD). Ichi chirwere chemajini chinonyanya kubata vakomana uye chinopedza simba tsandanyama dzavo zvishoma nezvishoma. Zviratidzo zvinowanzoonekwa muhudiki. Hapana mushonga wakakwana weDMD parizvino. Asi musazvidya mwoyo. Sainzi yezvekurapa iri kufambira mberi zuva nezuva. Nekufambira mberi ikoko, tariro itsva mushonga mutsva uyu unonzi Duvyzat. Ngatitaurei nezvazvo zviri nyore.
Chii chinonzi Duvyzat? Inoshanda sei?
Zvichitaurwa zviri nyore, tsandanyama dzedu dzinoda kugara dzichigadziriswa kuti dzirambe dzakasimba. Funga nezvetsandanyama dziri mumuviri wedu sedzakaita semadziro ezvidhinha. Kuti madziro aya arambe akasimba uye akabatana, anoda dhaka rakanaka. Saizvozvowo, kuti masero etsandanyama dzedu arambe akasimba, puroteni yakakosha inonzi dystrophin , yakafanana nedhaka, inokosha.
Duchenne muscular dystrophy (DMD) chirwere chinokonzerwa nemajini chinoitika kana muviri usingabudisi puroteni yedystrophin yakakwana, usingabudisi yakakwana, kana kuti usingabudisi yakakwana. Kana 'glue' iyi yakarasika, madziro emhasuru anoshaya simba, anoputsika uye haagone kugadziriswa. Ndosaka tsandanyama dzichipera simba nekufamba kwenguva.
Kuwedzera padambudziko iri, vana vane DMD vane ma enzymes anoshanda zvakanyanya anonzi histone deacetylases (HDACs) . Izvi zvinokonzera kuzvimba kwenguva refu mutsandanyama. Izvi zvinoderedza kugadzika kwetsandanyama, uye tsandanyama dzinotsiviwa nemafuta nenyama dzine mavanga.
Kusvika pari zvino, vanachiremba vanga vachishandisa masteroids, physiotherapy, uye zvishandiso zvekubatsira zvakaita semawheelchair kurapa DMD. Asi Duvyzat ndiyo mushonga wekutanga usingashandisi masteroid. Unoshanda nekudzora enzyme yeHDAC inoshanda zvakanyanya. Izvi zvinoderedza kuzvimba mutsandanyama uye zvinodzibvumira kuputsika. Izvi zvinoreva kuti kumhanya kwetsandanyama kunopera simba kunoderera.
Ndinofanira kushandisa mushonga uyu sei?
Duvyzat mushonga wemvura waunonwa nemuromo. Unofanira kutorwa kaviri pazuva, mangwanani uye manheru, pamwe chete nechikafu .
- Zvakakosha zvikuru kutora mushonga panguva imwe chete zuva nezuva .
- Usati washandisa bhodhoro remushonga, unofanira kurizunza zvakanaka kwemasekonzi makumi matatu .
- Yera mushonga, uchishandisa sirinji chaiyo inouya nawo.
- Chinonyanya kukosha: Usasanganise mushonga uyu nemvura kana chimwe chinhu chinonwiwa.
Chiremba wako anogona kupa mushonga uyu ari ega, kana kuti anogona kuupa pamwe chete nema steroids. Zvinosarudzwa zvichienderana nemamiriro emwana.
Zvinhu zvemushonga uyu zvakadzidzwa sei?
Muchidzidzo chikuru chekuongorora kushanda uye kuchengetedzeka kwemushonga uyu, vakomana vane DMD vakakamurwa kuita mapoka maviri.
1. Boka rekutanga: Vakapihwa mushonga weDuvyzat.
2. Boka rechipiri: Vakapihwa chimwe chinhu chakaita semushonga, asi chisina chinhu chinoshanda machiri. Mukurapa, tinoti ichi 'placebo' .
Izvi zvinoitirwa kuyera mhedzisiro chaiyo yemushonga uyu, kuti wakasiyana sei nekungovapo chete. Vese vakapinda muchidzidzo ichi vaive vakomana. Avhareji yezera ravo raive nemakore mapfumbamwe ekuberekwa.
| Zvinonyanya kukosha kuti munhu akwanise kupinda muchidzidzo ichi | |
|---|---|
| Bvunzo | Chinodiwa |
| Kukwira masitepisi mana | Mwana anopiwa nguva yekukwira nhanho ina nekukurumidza sezvinobvira. Izvi zvinofanirwa kutora masekondi asingasviki masere. |
| Nguva yekumuka | Nguva inotorwa kuti munhu amire asina rubatsiro inoyerwa. Izvi zvinotora masekondi matatu kusvika gumi. |
Mushure mekurapa uku kwemavhiki makumi manomwe nemaviri, shanduko muhunyanzvi hwevana dzakaongororwa. Mimwe miedzo yakati wandei yakashandiswa pakurapa uku.
- Chibodzwa cheNorth Star Ambulatory Assessment (NSAA): Nzira yekuyera kugona kwemunhu ane DMD kuita mabasa ezuva nezuva.
- Bvunzo yekufamba netsoka kwemaminitsi matanhatu: Inoona kuti unogona kufamba kusvika papi mumaminitsi matanhatu.
- Kuongororwa kweMRI: Kunoongorora kuchinja kwemafuta ari mutsandanyama dzemuhudyu.
Chii chakabuda muongororo iyi?
Mhedzisiro yacho inokurudzira zvikuru. DMD chirwere chinowedzera zviratidzo nekufamba kwenguva. Chakajeka muchidzidzo ichi ndechekuti mwero wekuderera kwevana vakatora Duvyzat wainonoka kupfuura wevana vasina kutora mushonga (placebo) .
Izvi zvinoreva kuti kunyange zvazvo mushonga uyu usingakwanise kurapa chirwere chose, unogona kuderedza mwero wekushaya simba kwetsandanyama uye kubatsira mwana kuchengetedza kugona kwake kushanda kwenguva yakareba.
- Simba uye kufamba-famba: Nguva yaitora kukwira masitepisi mana yakawedzera nemasekondi 1.25 chete mushure memavhiki makumi manomwe nemaviri muvana vakatora Duvyzat. Asi zvakatora masekondi matatu zvakare muvana vasina kutora mushonga uyu. Izvi zvinoreva kuti Duvyzat yakaderedza kudzikira kwekukwanisa kwavo kukwira masitepisi neanenge 40%.
- Zvibodzwa zveNSAA: Pakupera kwechidzidzo, kudzikira kwezvibodzwa zveNSAA kwaive kushoma zvakanyanya muvana vakatora Duvyzat pane avo vasina kutora mushonga uyu. Izvi zvinoratidzawo kuti mwero wekuderera kwesimba remhasuru wakadzikira.
Mhedzisiro iyi inogona kusiyana kumwana wako, saka unofanira kukurukura zvakanakira nenjodzi dzemushonga uyu nachiremba wako usati waita sarudzo.
Migumisiro yacho uye nzira yekuzvigadzirisa nayo?
Kufanana nemishonga yese, Duvyzat inogona kuva nemigumisiro yakaipa. Zvakakosha kuziva izvi.
| Mhedzisiro yedivi | Zvaunofanira kuita |
|---|---|
| Migumisiro yakajairika: - Manyoka - Kusvotwa/kurutsa - Marwadzo emudumbu - Kupindwa nechando | Kana ukaona chimwe chezviratidzo izvi , taurira chiremba wako nekukasika . Inwa mvura yakawanda nemvura. Chiremba wako anogona kukukurudzira mishonga kana kuchinja kudya kana zvichidikanwa. |
| Migumisiro yakaipa: - Kuderera kwemaplatelet eropa (thrombocytopenia) - Kuwedzera kwemafuta muropa (hypertriglyceridemia) | Chiremba anowanzoita bvunzo dzeropa kuti aongorore izvi. Kana ukakuvara zviri nyore, kana mhino yako ichibuda ropa, kana uchinetseka nekumisa kubuda ropa,Udza chiremba nekukasika. |
Izvi hazvisirizvo zvega zviratidzo. Kana ukasangana nezvimwe zviratidzo zvisingawanzoitiki, taura nachiremba wako nezvazvo.
Panogona kuva nematambudziko nemimwe mishonga here?
Ehe, Duvyzat inogona kupindirana nemimwe mishonga. Saka, zvakakosha kuudza chiremba wako nezvemishonga yese iri kutorwa nemwana wako, kusanganisira mishonga inonyorerwa nachiremba, mishonga isingatengeswi nechiremba (OTC), mavhitamini, uye mishonga yemishonga.
Zvikuru, zivisa chiremba wako kana uri kutora mishonga inotevera:
- Mimwe mishonga inoderedza cholesterol (semuenzaniso atorvastatin, simvastatin)
- Mishonga yechirwere cheshuga yakaita semetformin
- Mishonga inokanganisa rhythm yemoyo (semuenzaniso amiodarone)
- Mamwe maantibiotic (semuenzaniso azithromycin, ciprofloxacin)
- Mimwe mishonga yekurapa chirwere chepfungwa
- Mimwe mishonga yekurapa allergies
Rondedzero iyi haina kukwana, saka zvakanaka kuudza chiremba wako nezvese zviri kutorwa nemwana wako.
Mharidzo Yekuenda Nayo Kumba
- Duvyzat mushonga mutsva, usingashandise steroidal unoderedza mwero wekushaya simba kwetsandanyama kunokonzerwa neDuchenne Muscular Dystrophy (DMD).
- Izvi hazvizorapi chirwere chose, asi zvichabatsira zvikuru kuvandudza hupenyu hwemwana.
- Tevedzera mirairo yachiremba wako panguva chaiyo yekushandisa mushonga wacho. Kana ukasangana nemigumisiro yakaipa, zivisa chiremba wako nekukasika.
- Musakanganwa kuudza chiremba nezvemimwe mishonga yese iri kutorwa nemwana wenyu.
- Hausi wega parwendo urwu. Chiremba wako, murapi wemuviri wako, nemhuri yako vese varipo kuti vakubatsire. Usatya.
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