Kuqhelekile ukuba umntwana wakho afumane amanxeba amancinci kunye nemikrwelo ngelixa edlala. Kodwa, ngaba kuthatha ixesha elide kunesiqhelo ukuba amanxeba amancinci okanye ukopha impumlo kuyeke? Ngaba umzimba wakho uyagruzuka lula? Njengomzali, kuyaqondakala ukuba usenokuba nexhala kwaye uxhalabile ngento efana nale. Ngoko ke namhlanje, masithethe ngemeko enokubangela oku, kodwa ukuba ilawulwa ngokufanelekileyo , inokuvumela umntwana wakho ukuba aphile ubomi obuqhelekileyo. Yiyo loo nto i-hemophilia B.
Ngamafutshane, yintoni i-hemophilia B?
Kulungile, masiyibeke ngolu hlobo. Xa sifumana inxeba kwindawo ethile emzimbeni wethu, ukopha kuyayeka okwethutyana ngenxa yeeproteni ezikhethekileyo egazini lethu. Sizibiza ngokuba 'zizinto ezibangela ukujiya kwegazi ' okanye izinto ezibangela ukujiya kwegazi . Cinga ngezi njengeqela labasebenzi abafika ngokukhawuleza ukulungisa inxeba. Aba basebenzi basebenzisana ukwenza 'ihlwili' elimisa ukopha kwegazi.
Kukho iintlobo ezili-13 zezinto ezibangela ukugabha kwegazi egazini lethu. Umntwana one-hemophilia B unesiphene esikhulu se- factor IX, eyesithoba kwezi zinto zibangela ukugabha igazi. Ngaphandle kwesi sici sibalulekileyo sokugabha igazi, ihlwili eliyekisa ukopha igazi xa kukho ukwenzakala alikheki kakuhle. Yiyo loo nto ukopha kuqhubeka ixesha elide kunesiqhelo.
Le meko idla ngokufunyaniswa ebuntwaneni. Lipesenti elincinci kuphela labantu abane-hemophilia abanohlobo B. Ikwaxhaphake kakhulu kubafana kunamantombazana.
Yintoni unobangela wale meko?
Amaxesha amaninzi, umntwana uyifumana njengelifa kumama. Umama usenokuba ngumthwali wejini enesiphene ebangela esi sifo. Nangona kunjalo, ngamanye amaxesha, nokuba akukho mntu kusapho onale meko, umntwana usenokuba nesi sifo ngenxa yotshintsho olungacwangciswanga (ukuguqulwa kwejini) kwijini ngelixa umama esesibelekweni.
Sizibona njani ezi mpawu?
Iimpawu ezimbini eziphambili kukopha ixesha elide kunesiqhelo kunye nokudumba okulula . Lumka ezi mpawu kumntwana wakho.
| Uphawu | Iinkcukacha ezithe xaxe |
|---|---|
| Ukopha rhoqo kwempumlo | Ukuba uphuma igazi rhoqo ngaphandle kwesizathu esithile. |
| Ukopha kakhulu kwinxeba elincinci | Nokuba umkrwelo omncinci ubangela ukopha kakhulu. |
| Ukopha ngaphakathi emlonyeni | Ukuba izinyo liyaqhubeka nokopha emva kokulunywa okanye ukukhutshwa. |
| Ukopha kwakhona | Ukuba inxeba liqala ukopha kwakhona emva kokuba liyeke ukopha. |
| Igazi kumchamo okanye kwindle | Le yinto ekufuneka uyiqaphele. |
| Imivumbo emikhulu | Ukuba ufumana imivumbo emikhulu neluhlaza okwesibhakabhaka emzimbeni wakho ngokulula. |
Ngamanye amaxesha oku kuphuma kwegazi akubonakali kumphezulu womzimba. Kunokwenzeka nakwimisipha okanye kwilungu elifana nedolo okanye ingqiniba. Ukuba oku kuyenzeka, indawo iya kuvuvuka, ibe buhlungu, kwaye ivakale ifudumele xa uyichukumisa .
Ukuba uzibethela entloko, kufuneka ulumke kakhulu!
Kule meko, nokuba kukubetheka kancinci entloko kunokuba yingozi kakhulu. Kunokubangela ukopha ngaphakathi kwengqondo. Ukuba umntwana wakho ubetheka entloko naphi na, khangela naziphi na iimpawu ezilandelayo. Ukuba kunjalo, mse kwiSebe lezeMpilo eziNgxamisekileyo (ETU) lesibhedlele esikufutshane ngoko nangoko.
| Iimpawu zesilumkiso esingxamisekileyo sokuphuma kwegazi ebuchotsheni | |
|---|---|
| – Intloko ebuhlungu kakhulu | – Ukuhlanza |
| - Intlungu yentamo kunye nokuqina kwayo | – Ukulala kakhulu |
| – Ukulahlekelwa yingqondo ngequbuliso | – Ubunzima bokuhamba |
Ugqirha uluchonga njani ngokuchanekileyo olu sifo?
Kudla ngokuba nzima kancinci ukukubona oku kwiinyanga ezintandathu zokuqala zomntwana kuba abantwana abawi okanye bangonzakali kangako ngelo xesha. Kodwa usenokuqala ukuqaphela ezi ngxaki xa umntwana wakho eqala ukukhasa nokuhamba.
Xa usisa umntwana wakho kugqirha, uza kukubuza izinto ezifana nezi:
- "Le mivumbo kunye nokwenzakala kwenzeke njani?"
- "Kuthathe ixesha elingakanani ukuba ukopha kuphele?"
- "Ingaba umntwana usebenzisa amayeza?"
- "Ngaba kukho ezinye iingxaki zempilo?"
- "Ngaba kukho mntu kusapho lwakho onengxaki efana nale yokopha okanye ukugabha kwegazi?"
Emva koko, ukuqinisekisa ukuba uxilongiwe, ugqirha uya kuyalela uvavanyo lwegazi oluninzi lomntwana. Olu vavanyo lujonga ikakhulu ukuba kuthatha ixesha elingakanani ukuba igazi lijiye kwaye zeziphi izinto ezibangela ukujiya kwegazi ezingaphelelanga.
| Uvavanyo lwegazi | Ingaba ijongeka kanjani? |
|---|---|
| Inani elipheleleyo legazi (i-CBC) | Inika ulwazi olubalulekileyo malunga neentlobo kunye nobungakanani beeseli egazini. |
| Uvavanyo lwe-PT kunye ne-aPTT (Ixesha le-Prothrombin kunye neXesha le-Activated Partial Thromboplastin) | Zombini ezi zinto zilinganisa ixesha elithathwayo ukuze igazi lijiye. |
| Uvavanyo lweFactor VIII kunye neFactor IX | Amanqanaba ezi zinto zibangela ukujiya kwegazi alinganiswa ngokuchanekileyo. |
Zithini iindlela zonyango?
Akukho nyango lwale meko, kodwa ngokulawulwa kakuhle, umntwana wakho angaphila ubomi obukhutheleyo nobonwabisayo.
Unyango oluphambili yi -Replacement Therapy . Ngamafutshane, into engayifumaniyo umntwana, oko kukuthi, into engenziwa ngumzimba, ebizwa ngokuba yi-Factor IX , inikwa njengenaliti emthanjeni. I-Factor IX enikwayo isenokuvela kwi-plasma yegazi lomntu, okanye isenokuba yi-recombinant.
- Ukuba imeko imbi kakhulu: Ukuze umntwana angafumani ukopha, kuya kufuneka afumane olu nyango rhoqo.
- Ukuba imeko ayinzima kakhulu: Xa sele iqalile ukopha, unyango lunokufuneka kuphela ukuze lupheliswe.
Olu nyango lunokunikwa ekliniki. Ngamanye amaxesha, umongikazi unokuza ekhayeni lakho, okanye abazali banokuqeqeshwa ukuba balunike umntwana wabo ekhaya.
Izinto ekufuneka sizilumkele xa sinyamekela umntwana
- Uncedo lokuqala: Wakuba nje ufumene isilonda esincinci okanye ukukrweleka, coca indawo leyo, uyibambe ngokuqinileyo, kwaye ufake ibhandishi. Nangona kunjalo, xa wenzekele kakhulu, ngokuqinisekileyo kuya kufuneka ufune iingcebiso zonyango .
- Ukuzilolonga nobunzima: Ukuzilolonga okuqinisa izihlunu kubalulekile kuba izihlunu ezomeleleyo zinciphisa ukopha ngenxa yokwenzakala. Kwakhona, ukugcina ubunzima obusempilweni kubalulekile kuba ubunzima obugqithisileyo bubeka uxinzelelo olungakumbi kumalungu kwaye bunokunyusa iingxaki zokopha.
- Ukwazisa abanye oogqirha: Yazisa bonke ababoneleli ngeenkonzo zempilo, kuquka nogqirha wamazinyo womntwana, ngemeko yomntwana wakho, njengoko kusenokufuneka banikwe amayeza akhethekileyo okunceda igazi lijiye ngaphambi kokuba benze into efana nokukhupha izinyo.
- Musa ukunika umntwana amayeza ngaphandle kwengcebiso kagqirha: Ezinye iintlungu, ezifana ne-ibuprofen, zinokunyusa ukopha . Ngoko ke, musa ukunika umntwana wakho amayeza athengiswa ngaphandle kwemvume kagqirha ngaphandle kokubonisana nogqirha wakho kuqala.
- Ukhuseleko: Yenza konke okusemandleni akho ukukhusela umntwana wakho kwiingozi. Nxiba ii-knee pads, ii-elbow pads, kunye nesigcina-ntloko xa udlala. Lumka imiphetho ebukhali etafileni nasezihlalweni ekhaya.
Umyalezo Wokuya Ekhaya
- I-Hemophilia B yimeko yemfuza ebangelwa kukungabikho kwe -Factor IX , into ebangela ukujiya kwegazi.
- Ukuba umntwana wakho uneempawu ezifana nokopha ixesha elide kunesiqhelo okanye ukukrweleka lula, funa ingcebiso kagqirha ngokukhawuleza.
- Ukuba umntwana wakho ubetha entloko, yimeko engxamisekileyo . Ukuba uneempawu ezifana nentloko ebuhlungu kunye nokuhlanza, mse kwiYunithi yoNyango oluNgxamisekileyo yesibhedlele (ETU) ngoko nangoko.
- Soloko uqhagamshelana nogqirha wakho ngaphambi kokuba unikeze unyango kunye nazo naziphi na izithomalalisi zentlungu.
- Ngonyango olufanelekileyo, ulawulo olufanelekileyo, kunye nokulandela amanyathelo okhuseleko, umntwana wakho angaphila ubomi obusebenzayo nobuqhelekileyo. Musa ukoyika, kodwa qaphela.
I-Hemophilia B, ukujiya kwegazi, i-factor ix, izifo zabantwana, izifo zemfuza, ukopha kakhulu
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