Ndizachilendo kuti mwana wanu achite mabala ang'onoang'ono ndi mikwingwirima akamasewera. Koma, kodi zimatenga nthawi yayitali kuposa masiku onse kuti kuvulala pang'ono kapena kutuluka magazi m'mphuno kusiye? Kodi thupi lanu limavulala mosavuta? Monga kholo, n'zomveka kuti mungakhale ndi nkhawa komanso nkhawa ndi chinthu chonga ichi. Lero, tiyeni tikambirane za vuto lomwe lingayambitse izi, koma ngati litachitidwa bwino , lingathandize mwana wanu kukhala ndi moyo wabwinobwino. Ndi hemophilia B.
Mwachidule, kodi hemophilia B ndi chiyani?
Chabwino, tiyeni tinene motere. Tikapeza bala kwinakwake m'thupi lathu, kutuluka magazi kumasiya kwakanthawi chifukwa cha mapuloteni apadera m'magazi athu. Timatcha izi 'zopangira magazi kuundana ' kapena zinthu zopangira magazi kuundana . Taganizirani izi ngati gulu la ogwira ntchito omwe amabwera kudzakonza bala mwachangu. Ogwira ntchitowa amagwira ntchito limodzi kuti apange 'chophimba' chomwe chimaletsa kutuluka magazi.
Pali mitundu 13 ya zinthu zotsekereza magazi m'magazi mwathu. Mwana yemwe ali ndi hemophilia B ali ndi vuto lalikulu la factor IX, lachisanu ndi chinayi mwa zinthu zotsekereza magazi. Popanda chinthu chofunikira ichi chotsekereza magazi, magazi omwe amasiya kutuluka magazi akavulala sapangidwa bwino. Ichi ndichifukwa chake kutuluka magazi kumatenga nthawi yayitali kuposa masiku onse.
Matendawa nthawi zambiri amapezeka ali ana. Anthu ochepa okha omwe ali ndi matenda a hemophilia ndi omwe ali ndi mtundu wa B. Matendawa amapezekanso kwambiri mwa anyamata kuposa atsikana.
Kodi chifukwa cha vutoli n'chiyani?
Kawirikawiri, mwana amalandira izi kuchokera kwa mayi ake. Mayi ake akhoza kukhala ndi jini yolakwika yomwe imayambitsa matendawa. Komabe, nthawi zina, ngakhale palibe aliyense m'banjamo amene ali ndi vutoli, mwanayo akhoza kudwala matendawa chifukwa cha kusintha kwa majini mwachisawawa (mutation) mu jini pamene mayiyo ali m'mimba.
Kodi timazindikira bwanji zizindikiro zimenezi?
Zizindikiro ziwiri zazikulu ndi kutuluka magazi kwa nthawi yayitali kuposa masiku onse komanso kuvulala mosavuta . Yang'anirani zizindikiro izi mwa mwana wanu.
| Chizindikiro | Zambiri |
|---|---|
| Kutuluka magazi m'mphuno pafupipafupi | Ngati mumatuluka magazi pafupipafupi popanda chifukwa chenicheni. |
| Kutuluka magazi ambiri kuchokera pachilonda chaching'ono | Ngakhale kukanda pang'ono kumayambitsa kutuluka magazi ambiri. |
| Kutuluka magazi mkamwa | Ngati dzino likupitiriza kutuluka magazi pambuyo polumidwa kapena kuchotsedwa. |
| Kutulukanso magazi | Ngati bala layamba kutuluka magazi kachiwiri litasiya kutuluka magazi. |
| Magazi mu mkodzo kapena ndowe | Ichi ndi chinthu chomwe muyenera kudziwa. |
| Mabala akuluakulu | Ngati thupi lanu limakhala ndi mabala akuluakulu abuluu mosavuta. |
Nthawi zina kutuluka magazi kumeneku sikuoneka pamwamba pa thupi. Kungakhale mkati mwa minofu kapena malo olumikizirana mafupa monga bondo kapena chigongono. Ngati zimenezo zitachitika, malowo amakhala otupa, opweteka, ndipo amamva kutentha akakhudza .
Ngati mugunda mutu wanu, muyenera kusamala kwambiri!
Ndi vutoli, ngakhale kumenyedwa pang'ono pamutu kungakhale koopsa kwambiri. Kungayambitse kutuluka magazi muubongo. Ngati mwana wanu wagunda mutu kulikonse, yang'anani zizindikiro zotsatirazi. Ngati agunda, mutengereni ku Dipatimenti Yothandiza Anthu Odwala Mwadzidzidzi (ETU) yapafupi nthawi yomweyo.
| Zizindikiro zadzidzidzi za kutuluka magazi muubongo | |
|---|---|
| - Mutu waukulu | - Kusanza |
| - Kupweteka kwa khosi ndi kuuma kwake | - Kugona tulo topitirira muyeso |
| - Kutaya mwadzidzidzi chidziwitso | - Kuyenda movutikira |
Kodi dokotala amazindikira bwanji matendawa molondola?
Kawirikawiri zimakhala zovuta pang'ono kuziona izi m'miyezi 6 yoyambirira ya mwana chifukwa makanda sagwa kapena kuvulala kwambiri panthawiyo. Koma mungayambe kuzindikira mavutowa mwana wanu akayamba kukwawa ndi kuyenda.
Mukapita ndi mwana wanu kwa dokotala, adzakufunsani zinthu monga:
- "Kodi mabala ndi kuvulala kumeneku kunabwera bwanji?"
- "Zinatenga nthawi yayitali bwanji kuti magazi asiye kutuluka?"
- "Kodi mwanayo akumwa mankhwala aliwonse?"
- "Kodi pali mavuto ena azaumoyo?"
- "Kodi pali aliyense m'banjamo amene ali ndi vuto ngati ili la kutuluka magazi kapena kutsekeka kwa magazi?"
Kenako, kuti atsimikizire matendawa, dokotala adzalamula kuti mwanayo ayezedwe magazi kangapo. Izi makamaka zimayang'ana nthawi yomwe magazi amatenga kuti aundane komanso zinthu zomwe sizingagwirizane ndi magazi.
| Kuyezetsa magazi | Kodi chimawoneka bwanji? |
|---|---|
| Kuchuluka kwa Magazi Onse (CBC) | Amapereka chidziwitso chofunikira chokhudza mitundu ndi kuchuluka kwa maselo m'magazi. |
| Mayeso a PT ndi aPTT (Nthawi ya Prothrombin & Nthawi Yogwira Ntchito ya Partial Thromboplastin) | Zonsezi zimayesa nthawi yomwe magazi amaundana. |
| Mayeso a Factor VIII ndi Factor IX | Kuchuluka kwa zinthu zimenezi zomwe zimayambitsa magazi kuundana m'magazi kumayesedwa bwino. |
Kodi mankhwala ake ndi otani?
Palibe mankhwala a vutoli, koma ndi chisamaliro chabwino, mwana wanu akhoza kukhala ndi moyo wokangalika komanso wachimwemwe.
Chithandizo chachikulu ndi Replacement Therapy . Mwachidule, chinthu chomwe mwana akusowa, chomwe thupi silingathe kupanga, chotchedwa Factor IX , chimaperekedwa ngati jakisoni mumtsempha. Factor IX yomwe imaperekedwa ikhoza kuchokera ku plasma yamagazi a anthu, kapena ikhoza kukhala yogwirizananso.
- Ngati vutoli ndi lalikulu: Kuti mwana asatuluke magazi, ayenera kulandira chithandizochi nthawi zonse.
- Ngati vutoli silili lalikulu kwambiri: Kutuluka magazi kukayamba, chithandizo chingafunike kuti lithe.
Chithandizochi chingaperekedwe kuchipatala. Nthawi zina, namwino angabwere kunyumba kwanu, kapena makolo angaphunzitsidwe kupereka chithandizochi kwa mwana wawo kunyumba.
Zinthu zomwe tiyenera kusamala nazo posamalira mwana
- Chithandizo choyamba: Mukangovulala pang'ono kapena kukanda, yeretsani malowo, ligwireni mwamphamvu, ndikuyika bandeji. Komabe, ngati mwavulala kwambiri, muyenera kufunsa upangiri wa dokotala .
- Kuchita masewera olimbitsa thupi ndi kulemera: Kuchita masewera olimbitsa thupi komwe kumalimbitsa minofu n'kofunika chifukwa minofu yolimba imachepetsa kutuluka magazi chifukwa cha kuvulala. Komanso, kusunga kulemera koyenera n'kofunika chifukwa kulemera kochulukirapo kumaika mphamvu zambiri pa mafupa ndipo kungayambitse mavuto otuluka magazi.
- Kudziwitsa madokotala ena: Dziwitsani ogwira ntchito zachipatala onse, kuphatikizapo dokotala wa mano wa mwana wanu, za vuto la mwana wanu, chifukwa angafunike kupatsidwa mankhwala apadera othandizira magazi kuundana asanachite zina monga kuchotsa dzino.
- Musapereke mankhwala popanda uphungu wa dokotala: Mankhwala ena ochepetsa ululu, monga ibuprofen, amatha kuwonjezera magazi . Choncho, musapatse mwana wanu mankhwala aliwonse omwe amagulitsidwa popanda chilolezo cha dokotala.
- Chitetezo: Yesetsani kuteteza mwana wanu ku ngozi. Valani mawondo, ma elbow pads, ndi chisoti mukamasewera. Samalani ndi m'mbali zakuthwa pa matebulo ndi mipando kunyumba.
Uthenga Wopita Nawo Kunyumba
- Hemophilia B ndi matenda a majini omwe amayamba chifukwa cha kusowa kwa Factor IX , chinthu chomwe chimayambitsa magazi kuundana.
- Ngati mwana wanu ali ndi zizindikiro monga kutuluka magazi kwa nthawi yayitali kuposa masiku onse kapena kuvulala mosavuta, funsani thandizo la dokotala nthawi yomweyo.
- Ngati mwana wanu wagunda mutu, ndiye kuti ndi vuto ladzidzidzi . Ngati ali ndi zizindikiro monga mutu ndi kusanza, pitani naye kuchipatala nthawi yomweyo.
- Nthawi zonse funsani dokotala musanapereke chithandizo ndi mankhwala aliwonse ochepetsa ululu.
- Ndi chithandizo choyenera, chisamaliro choyenera, ndi kutsatira njira zodzitetezera, mwana wanu akhoza kukhala ndi moyo wokangalika komanso wabwinobwino. Musachite mantha, koma dziwani.
Hemophilia B, magazi kuundana, chinthu chachisanu ndi chimodzi, matenda a ana, matenda a majini, kutuluka magazi kwambiri
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