Kujwayelekile ukuthi ingane yakho encane ithole ukusikeka okuncane kanye nemihuzuko ngenkathi idlala. Kodwa, ingabe kuthatha isikhathi eside kunokujwayelekile ukuthi ukusikeka okuncane noma ukopha ekhaleni kume? Ingabe umzimba wakho uyaphuka kalula? Njengomzali, kuyaqondakala ukuthi ungase ukhathazeke futhi ukhathazeke ngento efana nale. Ngakho-ke namuhla, ake sixoxe ngesimo esingadala lokhu, kodwa uma siphathwa kahle , singavumela ingane yakho ukuba iphile impilo evamile. Leyo yi-hemophilia B.
Kalula nje, iyini i-hemophilia B?
Kulungile, ake sikubeke kanje. Uma sithola inxeba endaweni ethile emzimbeni wethu, ukuphuma kwegazi kuyama okwesikhashana ngenxa yamaprotheni akhethekile egazini lethu. Lokhu sikubiza ngokuthi 'izici zokujiya ' noma izici zokujiya . Cabanga ngalokhu njengeqembu lezisebenzi ezifika ukuzolungisa inxeba ngokushesha. Lezi zisebenzi zisebenza ndawonye ukwakha 'i-clot' evimba ukuphuma kwegazi.
Kunezinhlobo ezingu-13 zezinto ezibangela ukujiya kwegazi egazini lethu. Ingane ene-hemophilia B inokuntuleka okukhulu kwe- factor IX, okungesesishiyagalolunye kulezi zinto ezibangela ukujiya kwegazi. Ngaphandle kwalesi sici esibalulekile sokujiya kwegazi, i-clot evimba ukopha lapho kunokulimala ayikhi kahle. Yingakho ukopha kuhlala isikhathi eside kunokujwayelekile.
Lesi simo sivame ukutholakala ebuntwaneni. Amaphesenti amancane kuphela abantu abane-hemophilia abanohlobo B. Sivame kakhulu nakubafana kunamantombazane.
Iyini imbangela yalesi simo?
Ngokuvamile, ingane izuza lokhu kunina. Umama angase abe ngumthwali wesakhi sofuzo esinephutha esibangela lesi sifo. Kodwa-ke, ngezinye izikhathi, noma kungekho muntu emndenini onalesi simo, ingane ingase ibe nalesi sifo ngenxa yoshintsho olungahleliwe (ukuguqulwa kwesakhi sofuzo) esakhi sofuzo ngesikhathi umama esesibelethweni.
Sizibona kanjani lezi zimpawu?
Izimpawu ezimbili eziyinhloko ukopha isikhathi eside kunokujwayelekile kanye nokuphuka kalula . Qaphela lezi zimpawu enganeni yakho.
| Isibonakaliso | Ulwazi olwengeziwe |
|---|---|
| Ukopha igazi njalo | Uma uvame ukuphuma igazi ekhaleni ngaphandle kwesizathu esithile. |
| Ukopha ngokweqile okuvela enxebeni elincane | Noma ngabe ukuklwebheka okuncane kubangela ukuphuma kwegazi okuningi. |
| Ukopha ngaphakathi emlonyeni | Uma izinyo liqhubeka nokopha ngemva kokulunywa noma ukukhishwa. |
| Ukuphinda kophe igazi | Uma inxeba liqala ukopha futhi ngemva kokuba seliyeke ukopha. |
| Igazi emchameni noma esitulweni | Lesi futhi isici okufanele usiqaphele. |
| Imivimbo emikhulu | Uma uthola imivimbo emikhulu eluhlaza okwesibhakabhaka emzimbeni wakho kalula. |
Ngezinye izikhathi lokhu kuphuma kwegazi akubonakali ebusweni bomzimba. Kungavela futhi ngaphakathi kwemisipha noma ilunga njengedolo noma indololwane. Uma lokhu kwenzeka, indawo izovuvukala, ibe buhlungu, futhi izwakale ifudumele uma uyithinta .
Uma ushaya ikhanda lakho, kufanele uqaphele kakhulu!
Ngalesi simo, ngisho nokushaywa okuncane ekhanda kungaba yingozi kakhulu. Kungabangela ukopha ngaphakathi kobuchopho. Uma ingane yakho ishaya ikhanda noma kuphi, bheka noma yiziphi izimpawu ezilandelayo. Uma kwenzeka, yiyise eMnyangweni Wezimo Eziphuthumayo (ETU) wesibhedlela esiseduze ngokushesha.
| Izimpawu eziphuthumayo zokuxwayisa ngokopha ebuchosheni | |
|---|---|
| – Ikhanda elibuhlungu kakhulu | – Ukuhlanza |
| - Ubuhlungu bentamo nokuqina kwayo | – Ukulala ngokweqile |
| - Ukulahlekelwa ingqondo ngokuzumayo | – Ubunzima bokuhamba |
Udokotela usithola kanjani lesi sifo ngokunembile?
Ngokuvamile kuba nzima kancane ukukubona lokhu ezinyangeni zokuqala eziyisithupha zomntwana ngoba izingane aziwi noma zilimale kangako phakathi naleso sikhathi. Kodwa ungase uqale ukuqaphela lezi zinkinga lapho ingane yakho iqala ukukhasa nokuhamba.
Uma uyisa ingane yakho kudokotela, izokubuza izinto ezifana nalezi:
- "Lezi zivuvuko nokulimala kwenzeke kanjani?"
- "Kuthathe isikhathi esingakanani ukuthi ukopha kuphele?"
- "Ingabe ingane ithatha imithi ethile?"
- "Ingabe zikhona ezinye izinkinga zempilo?"
- "Ingabe ukhona emndenini onenkinga efana nale yokopha noma ukujiya kwegazi?"
Ngemuva kwalokho, ukuze aqinisekise ukuxilongwa, udokotela uzoyala ukuhlolwa kwegazi okuningana kwengane. Lokhu kubheka kakhulu ukuthi kuthatha isikhathi esingakanani ukuthi igazi lijiye nokuthi yiziphi izinto ezibangela ukujiya kwegazi ezinganele.
| Ukuhlolwa kwegazi | Kubukeka kanjani? |
|---|---|
| Inani Eliphelele Legazi (i-CBC) | Inikeza ulwazi olubalulekile mayelana nezinhlobo kanye namanani amaseli egazini. |
| Ukuhlolwa kwe-PT kanye ne-aPTT (Isikhathi se-Prothrombin kanye Nesikhathi se-Activated Partial Thromboplastin) | Zombili lezi zilinganisa isikhathi esithathwayo ukuze igazi lijiye. |
| Ukuhlolwa kwe-Factor VIII kanye ne-Factor IX | Amazinga alezi zinto ezibangela ukujiya kwegazi alinganiswa ngokunembile. |
Yiziphi izindlela zokwelapha?
Akukho ukwelashwa kwalesi simo, kodwa ngokuphathwa kahle, ingane yakho ingaphila impilo esebenzayo nejabulisayo.
Ukwelashwa okuyinhloko yi- Replacement Therapy . Kalula nje, isici ingane eswele, okungukuthi, isici umzimba ongakwazi ukusenza, esibizwa ngokuthi i-Factor IX , sinikezwa njengomjovo emthanjeni. I-Factor IX enikezwayo ingase ithathwe ku-plasma yegazi lomuntu, noma ingaba yi-recombinant.
- Uma isimo sibi kakhulu: Ukuze kuvinjelwe ukuphuma kwegazi, ingane kuzodingeka ithole lokhu kwelashwa njalo.
- Uma isimo singesibi kakhulu: Uma ukopha sekuqalile, ukwelashwa kungadingeka kuphela ukuze kumiswe.
Lokhu kwelashwa kunganikezwa emtholampilo. Ngezinye izikhathi, umhlengikazi angafika ekhaya lakho, noma abazali bangaqeqeshwa ukukunikeza ingane yabo ekhaya.
Izinto okudingeka siziqaphele lapho sinakekela ingane
- Usizo lokuqala: Uma nje uthola ukusikeka okuncane noma ukuklwebheka, hlanza indawo, uyibambe iqine, bese ubhandisha. Kodwa-ke, uma ulimele kakhulu, kufanele nakanjani ufune iseluleko sezokwelapha .
- Ukuzivocavoca kanye nesisindo: Ukuzivocavoca okuqinisa imisipha kubalulekile ngoba imisipha eqinile inciphisa ukopha ngenxa yokulimala. Futhi, ukugcina isisindo esinempilo kubalulekile ngoba isisindo esiningi sibeka ingcindezi enkulu emalungeni futhi singandisa izinkinga zokopha.
- Ukwazisa abanye odokotela: Yazisa bonke abahlinzeki bezempilo, okuhlanganisa nodokotela wamazinyo wengane, ngesimo sengane yakho, njengoba kungase kudingeke banikezwe imithi ekhethekile yokusiza ukujiya kwegazi ngaphambi kokwenza into efana nokukhipha izinyo.
- Unganiki ingane yakho imithi ngaphandle kweseluleko sikadokotela: Amanye amaphilisi obuhlungu, njenge-ibuprofen, angandisa ukopha . Ngakho-ke, ungayiniki ingane yakho imithi ethengwa ngaphandle kwemithi kadokotela ngaphandle kokubonisana nodokotela wakho kuqala.
- Ukuphepha: Yenza konke okusemandleni akho ukuvikela ingane yakho ezingozini. Gqoka ama-knee pad, ama-elbow pad, kanye nesigqoko sokuzivikela uma udlala. Qaphela imiphetho ebukhali ematafuleni nasezihlalweni ekhaya.
Umlayezo Wokuya Nawe Ekhaya
- I-Hemophilia B yisimo sofuzo esibangelwa ukuntuleka kwe -Factor IX , i-clotting factor egazini.
- Uma ingane yakho inezimpawu ezifana nokopha isikhathi eside kunokujwayelekile noma ukuphuka kalula, funa iseluleko sezokwelapha ngokushesha.
- Uma ingane yakho ishaya ikhanda layo, kuyisimo esiphuthumayo . Uma inezimpawu ezifana nekhanda elibuhlungu nokuhlanza, yiyise e-Emergency Treatment Unit (ETU) yesibhedlela ngokushesha.
- Njalo thintana nodokotela wakho ngaphambi kokunikeza ukwelashwa kanye nanoma yimiphi imithi yokwelapha izinhlungu.
- Ngokwelashwa okufanele, ukuphathwa okufanele, kanye nokulandela izinyathelo zokuphepha, ingane yakho ingaphila impilo esebenzayo nejwayelekile. Ungesabi, kodwa qaphela.
I-Hemophilia B, ukujiya kwegazi, i-factor ix, izifo zezingane, izifo zofuzo, ukopha ngokweqile
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