Ngaba wakha waqaphela ukuba umntwana wakho uhlala ediniwe kwaye ephaphathekile? Ngamanye amaxesha sicinga ukuba kunjalo kanye kubantwana abancinci, kodwa kusenokuba kukho isizathu esingasaziyo. Namhlanje siza kuthetha ngemeko yegazi engaqhelekanga, kodwa ebaluleke kakhulu ukwazi. Oku kubizwa ngokuba yiDiamond-Blackfan Anemia (DBA).
Ngamafutshane, yintoni iDiamond-Blackfan Anemia (DBA)?
Esi sisifo segazi esingaqhelekanga. Ngamafutshane, okwenzekayo kukuba umongo wethu awukwazi ukuvelisa iiseli ezibomvu zegazi ezaneleyo. Uyazi, ezi seli zibomvu zezo zithwala ioksijini emizimbeni yethu. Ngoko ke xa zinganele, zinefuthe elikhulu ekusebenzeni komzimba.
I-DBA sisifo semfuza . Oku kuthetha ukuba le meko ibangelwa kukutshintsha kwemfuza. Olu tshintsho lwemfuza lubonisa ukuba iimpawu zinzima kangakanani. Ichaphazela malunga nomntwana omnye kwi-500,000 kwihlabathi liphela. Nangona yimeko yobomi bonke, ngonyango olufanelekileyo, iimpawu zinokulawulwa kwaye ubomi obuhle bunokuphilwa .
Zithini iimpawu zesi sifo?
Phantse wonke umntu one-DBA une-anemia. Oko kuthetha ukunqongophala kwegazi. Iimpawu zinokuba buthathaka kakhulu kwabanye, kwaye zinokuba nzima kakhulu kwabanye. Makhe sijonge iimpawu eziphambili ezinokubonwa.
| Uphawu | Ingcaciso elula |
|---|---|
| Ukudinwa | Ngenxa yokuba umzimba awufumani ioksijini efunekayo, uhlala uziva ulele kwaye udiniwe kakhulu ukuba ungenza nantoni na. |
| Ubumhlophe besikhumba (Ubumhlophe) | Iintende zezandla, imilebe, kunye neendawo ezingaphantsi kwamehlo, ngakumbi, zibonakala zimhlophe. Oku kungenxa yokungabikho kweeseli ezibomvu zegazi, nto leyo enciphisa umbala obomvu wegazi. |
| Ukubetha kwentliziyo ngokukhawuleza (iTachycardia) | Xa izicubu zomzimba zingafumani ioksijini eyaneleyo, intliziyo kufuneka isebenze nzima ukuze ihlawulele ukunqongophala kwayo. Ngenxa yoko, intliziyo ibetha ngokukhawuleza. |
| Ubunzima bokuphefumla | Kuba nzima ukuphefumla ngamanye amaxesha, njengaxa uhamba umgama omfutshane okanye unyuka izinyuko. |
| Ukulahlekelwa ngumdla wokutya kunye nobuthathaka | Usenokubona nokuphelelwa ngumdla wokutya kunye nobuthathaka. |
| Intloko ebuhlungu kunye nokudumba kwamalungu omzimba | Abanye abantu banokufumana iimpawu ezifana neentloko ezibuhlungu kunye nokudumba kwamalungu omzimba. |
Kutheni oku kusenzeka?
Khawucinge ukuba kukho incwadi enika imiyalelo yayo yonke into emzimbeni wethu, ebizwa ngokuba zii-genes zethu. Kukho uhlobo lwe-gene olunika imiyalelo yokwenza iiseli ezibomvu zegazi olubizwa ngokuba yi-`ribosomal protein genes`. I-DBA yenzeka xa kukho umahluko kwezo genes. Emva koko inkqubo yokwenza iiseli ezibomvu zegazi ayisebenzi kakuhle.
Phakathi kwe-10% kunye ne-25% yabantu abane-DBA bayizuza njengelifa kubazali babo. Nangona kunjalo, kwiimeko ezininzi, yimeko entsha engakhange ibonwe mntu kusapho ngaphambili .
Ngaba oku kungabangela ezinye iingxaki?
Ewe, i-DBA inomngcipheko wezinye iingxaki zempilo ezininzi.
Into ebalulekileyo kukuba ayizizo zonke ezi zinto ezenzekayo kuye wonke umntu. Kodwa kubaluleke kakhulu ukuqaphela oku kwaye uhlale unxibelelana nogqirha wakho.
| Iingxaki ezinokwenzeka | Ithetha ntoni le nto? |
|---|---|
| Iziphene zokuzalwa | Kukho ithuba lokuzalwa uneengxaki ezithile entliziyweni, kwizintso, okanye emalungeni. |
| Ukukhula kuyawohloka | Ukukhula komntwana kusenokulibaziseka ngenxa yeminyaka yakhe. |
| Ukugqithisa isinyithi | Ukunikela ngegazi rhoqo kunokubangela ukuba amanqanaba e-iron emzimbeni anyuke ngokungeyomfuneko. |
| Ukuncipha kwezinye iiseli zegazi | Iimeko ezinje ngokuncipha kwee-neutrophils, uhlobo lweeseli ezimhlophe zegazi, (i-Neutropenia), ukwehla kwee-platelet (i-Thrombocytopenia), okanye ukwehla kwazo zonke iintlobo zeeseli egazini (i-Pancytopenia) kunokwenzeka. |
| Masiqaphele nomngcipheko womhlaza. | |
Abantu abane-DBA basengozini enkulu kancinci yokuhlaselwa ziintlobo ezithile zomhlaza kunabantu ngokubanzi. Ezi ziquka:
| |
Oogqirha bayifumana njani le nto?
Ukuba ugqirha wakho urhanela ukuba esi sifo sikhona, uza kwenza uvavanyo oluninzi ukuqinisekisa ukuba sikhona.
- Ubalo lwegazi olupheleleyo (CBC): Oku kujonga inani leeseli ezibomvu zegazi, iiseli ezimhlophe zegazi, iiplatelets, kunye ne-hemoglobin (hemoglobin) egazini. Kwi-DBA, iiseli ezibomvu zegazi kunye namanqanaba e-hemoglobin aphantsi kakhulu.
- Inani leeReticulocytes: IiReticulocytes ziiseli ezibomvu zegazi ezisandula ukwakheka, ezingavuthwanga. Inani eliphantsi lala maseli lithetha ukuba kukho ingxaki ngomongo wethambo ovelisa iiseli ezibomvu zegazi.
- Ukufutha kweBone Marrow kunye neBiopsy: Oku kuquka ukuthatha isampuli encinci yomongo wethambo uze uwuhlole phantsi kwe-microscope. Oku kunokunceda ekuqinisekiseni ukuba imveliso yeeseli ezibomvu zegazi iyancipha na.
Zithini iindlela zonyango?
Kukho iindlela ezahlukeneyo zonyango lwe-DBA. Ugqirha uya kumisela unyango olufanelekileyo ngokusekelwe kwimeko yesigulana.
1. IiCorticosteroids: La ngamayeza ohlobo lwe-steroid. La mayeza avuselela umongo wethambo kwaye anyuse imveliso yeeseli ezibomvu zegazi. Iziphumo zihlala zibonakala kwiiveki ezimbini ukuya kwezine.
2. Utofelo-gazi: Ngamafutshane, utofelo-gazi. Ukunika isigulana iiseli ezibomvu zegazi ezivela kubanikeli kunokubuyisela ngokukhawuleza inani leeseli ezibomvu zegazi emzimbeni. Olu lunyango oludla ngokuqaliswa kwangoko emva kokuba kufunyenwe isifo.
3. Ukufakelwa kweeStem Cell: Le yindlela ekuphela kwayo yokunyanga esi sifo ngokupheleleyo . Nangona kunjalo, olu lunyango oluntsonkothileyo, olunobungozi, nolunokubeka ubomi esichengeni. Ke ngoko, oogqirha bajonga isigulana ngasinye ngokwahlukeneyo kwaye basebenzisa olu nyango kuphela xa kuyimfuneko.
Kuza kwenzeka ntoni kwixesha elizayo? Kuthekani ngobomi obulindelekileyo?
Ngonyango olufanelekileyo kunye nokuhlolwa rhoqo ngugqirha, izigulane ze-DBA zinokuphila ubomi obulungileyo. Nangona kunjalo, le yimeko efuna unyango lobomi bonke. Emva kweminyaka engama-25 ubudala, umngcipheko weengxaki ezinkulu unokwanda kancinci.
Ngokuphathelele ixesha lokuphila, liyahluka kumntu nomntu. Kuxhomekeke kubukhali beempawu kunye nendlela esabela ngayo kunyango. Izifundo zibonise ukuba ngonyango, malunga ne-75% yezigulana ziphila iminyaka engama-50 ubudala . Nangona kunjalo, ekubeni esi sisifo esingaqhelekanga, idatha ilinganiselwe. Ngugqirha wakho kuphela onokukunika ulwazi oluchanekileyo malunga nemeko yakho.
Ndifanele ndimbone nini ugqirha?
Ukuba wena okanye umntwana wakho une-DBA, kubalulekile ukuba nihlale ninxibelelana rhoqo nogqirha wenu. Ungaze uphoswe ziintlanganiso zenu zeklinikhi ezicwangcisiweyo.
Kwakhona, ukuba uziva ukuba iimpawu zakho ziya zisiba mandundu, umzekelo, ukuba ngequbuliso uzive udiniwe ngakumbi okanye ukuba ufumana usulelo rhoqo , xelela ugqirha wakho ngoko nangoko.
Yintoni omawuyenze xa kukho imeko engxamisekileyo?
Ukuba kukho naziphi na kwezi mpawu zilandelayo, yiya kwiSebe lezeMpilo eziNgxamisekileyo (ETU) elikufutshane nawe ngoko nangoko.
- Iintlungu zesifuba
- Intlungu ebuhlungu yesisu
- Intloko ebuhlungu kakhulu ngequbuliso okanye ukulahlekelwa zingqondo (kusenokuba ziimpawu zestroke)
- Ukopha okungalawulekiyo
Ukuphila nemeko yobomi bonke efana ne-DBA, abantu abaninzi abangazange bayive, akulula. Inokuba nzima kakhulu xa ichaphazela umntwana wakho. Ungaziva uwedwa. Kodwa khumbula, awuwedwa. Ugqirha wakho kunye neqela lezonyango baya kukunika inkxaso, iingcebiso kunye nesicwangciso sonyango olufunekayo.
Umyalezo Wokuya Ekhaya
- I-Diamond-Blackfan anemia (DBA) sisifo esingaqhelekanga, esibangelwa yimfuza esichaphazela ukuveliswa kweeseli ezibomvu zegazi kwithambo lomongo.
- Iimpawu eziphambili kukukhanya okubangelwa kukungafumani igazi, ukudinwa rhoqo, kunye nokuphelelwa ngumphefumlo.
- Iimpawu zingalawulwa kakuhle ngamayeza e-steroid kunye notofelo-gazi. Nangona ukufakelwa kweeseli ze-stem kwenziwa ukuze kunyangeke ngokupheleleyo, lunyango oluyingozi.
- Ekubeni le yimeko yobomi bonke, kubaluleke kakhulu ukufumana ulwalathiso lwezonyango rhoqo kunye nonyango olufanelekileyo.
- Ukuba wena okanye umntwana wakho nineempawu okanye imibuzo malunga nesi sifo, ungaze ungathandabuzi ukuthetha nogqirha wakho.
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