Kana uine ronda diki pamuviri wako, kana kuti zino rako rabviswa, kubuda ropa kunoramba kuchienderera mberi pasina kumira here? Kana kuti dzimwe nguva une mavanga ebhuruu pamuviri wako usingarove chero kupi? Unoona mavanga mumuviri wako wese here, kunyanya kana mwana wako anotanga kukambaira kana kufamba? Kana zvinhu zvakaita seizvi zvikaitika, chikonzero chingave chirwere chinonzi hemophilia . Usatya paunonzwa zita iri. Nekurapwa kwakakodzera , unogona kurarama hupenyu hwakajairika, hwakazara. Ngatitaurei nezvazvo zvakajeka uye zviri nyore nhasi.
Zvichitaurwa zviri nyore, chii chinonzi Hemophilia A?
Zvichitaurwa zviri nyore, Hemophilia A chirwere chekuti ropa redu harigwambi zvakanaka. Kazhinji, patinokuvara, ropa redu rinogwamba kuti rimise kubuda kweropa. Izvi zvinobatsirwa nemapuroteni akakosha ari muropa redu. Tinodaidza izvi kuti "zvinhu zvinogwamba."
Munhu ane hemophilia A haabudisi zvakakwana clotting factor Factor VIII . Kukosha kwechirwere kunoenderana nekuti puroteni iyi yeFactor VIII inodzikira sei. Saka, yakakamurwa kuita zvikamu zvitatu:
- Hemophilia isina kusimba: Mazinga eFactor VIII aripo kusvika pamwero wakati.
- Hemophilia iri pakati nepakati: Mazinga eFactor VIII akaderera zvakanyanya.
- Hemophilia yakanyanya: Mazinga eFactor VIII akaderera zvikuru kana kuti haasipo.
Kazhinji, chirwere ichi chinokonzerwa nemajini chinowanikwa mumhuri. Zvisinei, muchikamu chimwe muzvitatu chezviitiko, munhu mutsva anogona kubatwa nechirwere ichi pasina mumwe munhu mumhuri ane chirwere ichi.
Chii chinokonzera hemophilia?
Ichi chinhu chatinogara nhaka kuburikidza nemajini. Funga nezvazvo, hunhu hwese hwemuviri wedu hunotsanangurwa nemajini. Mukadzi ane machromosome maviri eX (XX), nepo murume aine chromosome imwe yeX uye imwe yeY (XY).
Kukanganisika kwemajini kunobatanidzwa nehemophilia kunowanikwa pa X chromosome .
Saka, kana amai vari "vatakuri" vejini iri risina kunaka, kazhinji havaratidzi zviratidzo. Nekuti imwe chromosome yavo yeX ine hutano inogadzira puroteni inodiwa yefactor VIII. Asi kana mwanakomana wavo akagara nhaka iyi chromosome yeX isina kunaka, mwanakomana iyeye achava nehemophilia. Nekuti mukomana ane chromosome imwe chete yeX. Nekuda kweizvi, hemophilia inowanikwa zvakanyanya muvakomana kupfuura muvasikana.
Kashoma kuti vanhu vakuru vane makore ari pakati pe60 ne80 vabatwe nehemophilia. Izvi zvinoitika kana masoja emuviri ekudzivirira chirwere achirwisa zvinhu zvinogwamba ropa zvakanaka. Zvinogonawo kuitika panguva yekuzvitakura, nekenza , uye nedzimwe zvirwere zvemuviri .
Ndezvipi zviratidzo zve hemophilia?
Zviratidzo zvinoenderana nekuti chirwere chako chakanyanya kudzika, chiri pakati nepakati, kana kuti chakanyanya kuoma.
| Hurwere hwechirwere | Zvinhu zvinoonekwa |
|---|---|
| Hemophilia isina kusimba | Kazhinji, kubuda ropa rakawanda kunoitika chete mushure mekuvhiyiwa, kubviswa kwezino, kusununguka, kana tsaona yakakura. Vamwe vanhu havatombozivi kuti vanaro kusvika vakura. |
| Hemophilia iri pakati nepakati | - Kana munhu akuvara, kubuda ropa kwakawanda kunobuda. - Dzimwe nguva kubuda ropa kunoitika pasina chikonzero. - Muviri unokuvara zviri nyore uye unoshanduka kuita bhuruu. - Kana wabayiwa jekiseni, zvinotora nguva yakareba kuti ropa ribude. |
| Kupera ropa zvakanyanya | Kubuda ropa kunowanzoitika kunyangwe pasina kukuvara. Kubuda ropa kunogona kuitika kunyanya mumajoini netsandanyama . Izvi zvinorwadza zvikuru. |
Zviratidzo zvekubuda ropa muuropi
Kana munhu ane hemophilia yakanyanya akarohwa zvishoma mumusoro, kubuda ropa muuropi kunogona kuitika. Iyi idambudziko guru. Kana uine kukuvara mumusoro uye chimwe chezviratidzo zvinotevera, fonera chiremba wako nekukasika kana kuenda kudhipatimendi re emergency riri pedyo (ETU).
- Musoro wakaoma unoramba uripo
- Kurutsa
- Kurara kakawanda kana kuneta zvakanyanya
- Kushaya simba kamwe kamwe kana kuoma kufamba
- Kuona kaviri
- Kubatwa nepfari
Nzira yekuziva sei chirwere ichi?
Kana mumwe munhu mumhuri mako aine hemophilia, unogona kuongororwa chirwere ichi mwana wako paunenge uine pamuviri. Zvisinei, pane dzimwe njodzi dzinosanganisirwa nekuongororwa uku, saka unofanira kukurukura nachiremba wako.
Zvirwere zvakakomba zvehemophilia muvana vadiki zvinowanzoonekwa mukati megore rekutanga rehupenyu hwavo. Kana mwana wako akatanga kutenderera otanga kukambaira otanga kuona mavanga akakura pamuviri wake, taura nachiremba wako nezvazvo.
Chiremba anogona kukubvunza mibvunzo yakaita seiyi:
- Mavanga aya nekubuda ropa kwakaitika sei?
- Kubuda ropa kwave kwenguva yakareba sei?
- Pane mishonga here yekuti vana vanwe?
- Pane mumwe munhu mumhuri yako ane dambudziko rekugwamba kweropa here?
Zvadaro, ropa richaongororwa kakawanda kuti rionekwe kuti chirwere chacho chabuda here. Unogonawo kutumirwa kuna chiremba weropa.
| Zita reMuedzo | Chii chaunoona pane izvi? |
|---|---|
| Kuwanda Kweropa Rakazara (CBC) | Mhando dzemasero muropa uye huwandu hwehemoglobin zvinoongororwa. Izvi zvinogona kubatsira kuona kana paine anemia inokonzerwa nekubuda ropa. |
| Bvunzo dzePT ne aPTT | Inoyera kuti zvinotora nguva yakareba sei kuti ropa rigwambe. APTT value inowanzo wedzera kana munhu aine hemophilia. |
| Miedzo yeFactor VIII neFactor IX | Vanoyera chaizvo kuti puroteni iyi yakawanda sei muropa. Kana factor VIII yakaderera, ihemophilia A. |
| Kuedzwa kwemajini | Kuchinja kwemajini kunokonzera chirwere ichi kunogona kuzivikanwa. Kana ari mukadzi, zvinogonawo kuonekwa kana ari iye ane chirwere ichi. |
Inorapwa sei?
Nzira yekurapa inoenderana nekuoma kwechirwere, zera rako, uye zvaunoda iwe pachako. Chinangwa chikuru chekurapa ndechekutsiva puroteni yefactor VIII iri mumuviri. Izvi zvinonzi factor replacement therapy . Kunyangwe izvi zvisingarape chirwere chose, zvinogona kubatsira kudzora kubuda ropa uye kukubvumidza kurarama hupenyu hwakajairika.
Kune mhando mbiri dzekurapa:
- Kurapa Nekudzivirira: Jekiseni re factor VIII rinoitwa nguva nenguva panguva yakatarwa kudzivirira kubuda ropa, pane kumirira kubuda ropa . Izvi zvakakosha zvikuru kune vanhu vane hemophilia yakanyanya.
- Kurapwa Paunoda: Kurapwa chete kana ropa rabuda .
Kune mhando mbiri dzemishonga inodzivirira chirwere chefactor VIII:
1. Recombinant Factor VIII: Zvinhu zvinogadzirwa murabhoritari uchishandisa genetic engineering. Izvi ndizvo zvinonyanya kushandiswa nhasi.
2. Chinhu VIII chinobva muplasma: Chinhu chinowanikwa kubva muplasma yeropa revanhu.
Vanhu vane hemophilia A iri pakati nepakati vanogona kushandisa mushonga unonzi Desmopressin (DDAVP) . Izvi zvinoshanda nekuburitsa factor VIII yakachengetwa muropa.
Pamusoro pezvo, mishonga inonwiwa yakaita seTranexamic Acid, iyo inodzivirira kupwanyika kweropa, inoshandiswawo mumamiriro ezvinhu akadai sekubviswa kwezino.
Zvakakosha: Sezvo munhu ane hemophilia angada kuwedzerwa ropa nguva nenguva, zvakakosha zvikuru kuti abaiwe majekiseni eHepatitis A neB. Bvunza chiremba wako nezvenyaya iyi.
Unoita sei hupenyu hwezuva nezuva?
Kana uchirarama nechirwere chehemophilia, unofanira kufunga zvishoma nezvekuchengetedzeka.
- Iva nechido: Kurovedza muviri kunosimbisa tsandanyama. Tsandanyama dzakasimba dzinopa dziviriro yakanaka kumapfundo. Zvisinei, dzivisa mitambo yekubata majoini yakaita serugby neboxing. Kushambira, kufamba, uye kuchovha bhasikoro (nengowani) isarudzo dzakanaka. Taura nachiremba wako nezvemitambo yakakodzera iwe.
- Dzivirira vana: Kana uine mwana mudiki, pfeka mapedhi emabvi, mapedhi egokora, nengowani paunenge uchitamba. Zvidzivirire kubva kumidziyo ine mativi akapinza mumba mako.
- Hutano hwemazino:Ramba uine hutsanana hwakanaka hwemazino. Shamba mazino ako zuva nezuva. Izvi zvinogona kubatsira kuderedza kudiwa kwekubviswa kwezino uye kurapwa kukuru kwemazino. Usati waenda kuna chiremba wemazino, iva nechokwadi chekumuudza kuti une hemophilia.
- Mishonga isingafaniri kunwiwa: Mishonga inouraya marwadzo yakaita seaspirin neNSAIDs (semuenzaniso, ibuprofen, diclofenac) inogona kudzivirira kuumbwa kweropa zvakanyanya. Usatore chero mushonga usina kubvunza chiremba wako.
Mharidzo Yekuenda Nayo Kumba
- Hemophilia A chirwere chemajini chinokonzerwa nekushaikwa kweprotein Factor VIII, iyo inodiwa kuti ropa rigwambe.
- Izvi zvinonyanya kuonekwa muvakomana, asi vakadzi vanogona kunge vari ivo vanotakura chirwere ichi.
- Zviratidzo zvikuru kubuda ropa rakawanda kubva kukukuvara kudiki uye mavanga.
- Kana uine kukuvara mumusoro uye zviratidzo zvakaita semusoro wakanyanya, kurutsa, kana hope, idambudziko. Tsvaga rubatsiro rwechiremba nekukasika.
- Kana munhu aine chirwere chehemophilia, anogona kurarama hupenyu hwakazara uye hune simba (Factor Replacement Therapy) uye mararamiro akachengeteka.
- Gara uchikurukura mishonga yese yauri kutora nachiremba wako usati wavhiyiwa kana kurapwa kwemazino.
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