Usenokuba nexhala, mhlawumbi noloyiko, malunga nokukhula komntwana wakho, ingakumbi ubude bakhe. Kuqhelekile ukuba uzive ngolu hlobo njengomzali ophila nesifo esibizwa ngokuba yi-Achondroplasia. Kodwa awuwedwa. Ngokuhambela phambili kwisayensi yezonyango, ngoku kukho unyango olutsha olunokunceda kwezi meko. Namhlanje, sithetha ngeyeza elibizwa ngokuba yi-Voxzogo, elizise ithemba elitsha, ngakumbi kubantwana abane-Achondroplasia.
Yintoni kanye kanye i-achondroplasia?
Ngamafutshane, i-Achondroplasia yimeko yemfuza ebangela ubudwarha. Ichaphazela indlela akhula ngayo amathambo abantwana, ingakumbi amathambo amade (asezingalweni nasemilenzeni). Yimeko engaqhelekanga kakhulu, eyenzeka malunga nomntwana omnye kwabayi-15,000 ukuya kuma-40,000 abazalwayo.
Kwiimeko ezininzi, oku akuyonto izuzwe ngabazali, kodwa yinto eyenzekayo emzimbeni womntwana ngenxa yotshintsho olutsha lwemfuza (uguquko). Ngoko ke musa ukuziva unetyala ngale nto. Le meko inokubangela iingxaki zempilo ezongezelelweyo njengoko umntwana ekhula, njengokutyeba kakhulu, usulelo lweendlebe, kunye neengxaki zemithambo-luvo yomqolo nengqondo.
Kukho iimpawu ezininzi eziqhelekileyo ezinokubonwa kumntwana one-achondroplasia.
| Ilungu lomzimba | Uphawu olubonakalayo |
|---|---|
| Izandla neenyawo | Ukufinyela kweengalo nemilenze xa kuthelekiswa nomzimba wonke. |
| Intloko | Ukuba nentloko nebunzi elikhulu kunesiqhelo. |
| Impumlo | Ukuba nempumlo ethe tyaba. |
| Umqolo | Ukubona umqolo ogobileyo. |
| Imilenze | Imilenze egobile. |
Isebenza njani iVoxzogo?
Ukuze siqonde oku, kufuneka siqale sifunde kancinci ngeepleyiti zokukhula . Cinga ngezi pleyiti zokukhula ezisekupheleni kwamathambo ethu amade njengendawo apho kubekwa khona i-asphalt entsha rhoqo xa kusakhiwa indlela. Zenziwe ngethishu eqinileyo, eguquguqukayo ebizwa ngokuba yi-cartilage. Njengoko umntwana ekhula, le cartilage ijika ibe yithambo, kwaye ithambo liyakhula. Xa umntwana ekhulile ngokupheleleyo, ezi pleyiti zokukhula ziyavaleka, kwaye ukukhula kobude kuyayeka.
Kubantwana abane-achondroplasia, utshintsho kwi-genes (DNA) luphazamisa enye yeenkqubo zomzimba zokuthumela imiyalezo. Kukho iinkqubo ezimbini zemiyalezo emzimbeni wethu ezichaphazela ukukhula kwamathambo:
1. Inkqubo ekhulisa ukukhula kwamathambo.
2. Inkqubo enciphisa (emisa) ukukhula kwamathambo.
Kwi-achondroplasia, utshintsho lwemfuza lubangela ukuba inkqubo yokubonisana ecothisa ukukhula kwamathambo isebenze kakhulu.
Into eyenziwa yiVoxzogo kukukhuthaza inkqubo yokubonisana ekhuthaza ukukhula kwamathambo kwaye ilawule impembelelo yenkqubo ecothisa ukukhula. Ngamanye amazwi, eli yeza lonyusa uphawu lwe-"Go" lokukhula kwamathambo.
Injongo yolu nyango kukusebenzisa eli yeza ngelixa iipleyiti zokukhula komntwana zivuliwe, nto leyo ebanceda ukuba bafikelele ekukhuleni okuphezulu. Xa iipleyiti zokukhula zivala, oko kuthetha ukuba umntwana uyeka ukukhula, iyeza liyayekwa. Oku kumiselwa ngugqirha wakho.
Ulisebenzisa njani eli yeza?
I-Voxzogo yinaliti enikwa phantsi kolusu lomntwana wakho yonke imihla, malunga nexesha elifanayo yonke imihla . Yenzelwe ukuba ukwazi ukuyinika ekhaya.
- Iindawo zokufaka inaliti: Le ifakwa phantsi kolusu lomntwana wakho. Ungasebenzisa ithanga lomntwana wakho, isisu sakhe (malunga neesentimitha ezimbini ukusuka enkabeni), iimpundu, okanye umva wengalo yakhe engasentla .
- Eyona nto ibalulekileyo: Musa ukuqhubeka ufaka inaliti kwindawo enye. Ukuba ufaka inaliti kwindawo enye namhlanje, yifake kwindawo eyahlukileyo ngomso. Oku sikubiza ngokuba yi-'injection site rotation'. Oku kunokunciphisa ukungakhululeki okufana nokubomvu kunye nentlungu. Musa ukufaka inaliti kwiindawo ezinolusu oludumbileyo, olunamanxeba, olubomvu, okanye oluqinileyo.
- Okubalulekileyo: Iyure enye ngaphambi kokufakwa inaliti, yondla umntwana wakho isidlo esimnandi kwaye umnike iglasi enkulu (malunga ne-8-10 ounces) yamanzi, ubisi, okanye ijusi yeziqhamo. Eli yeza ngamanye amaxesha linokubangela uxinzelelo lwegazi oluphantsi, olunokukwenza uzive udiniwe okanye unesizungu. Ukunika umntwana wakho ukutya kunye nezinto eziselwayo kwangaphambili kunokunciphisa kakhulu le ngozi.
Umthamo weyeza elinikwa umntwana umiselwa bubunzima bomntwana. Kufuneka uxelele ugqirha ukuba ubunzima bomntwana buyatshintsha. Ugqirha wakho uza kukufundisa indlela yokufaka oku kumntwana wakho ngqo. Ungaze uzame ukukwenza ngokwakho ude ufumane olo qeqesho. Kwakhona funda incwadana yemiyalelo eza neyeza ngononophelo.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na imithi, iVoxzogo inokubangela ezinye iziphumo ebezingalindelekanga. Kubalulekile ukuzazi ezi.
- Iimpendulo kwindawo yokuhlatywa kwenaliti: Le yeyona miphumo ixhaphakileyo. Kusenokuba bomvu, ukudumba, ukurhawuzelela, ukukrweleka, okanye iintlungu kwindawo yokuhlatywa kwenaliti. Oku kunokunyangeka ngokufaka i-compress epholileyo kwindawo leyo. Qiniseka ukuba uthetha nogqirha wakho ngaphambi kokuba uthathe naliphi na iyeza lentlungu okanye ukurhawuzelela.
- Uxinzelelo Lwegazi Oluphantsi: Njengoko besitshilo ngaphambili, oku kungcono ukuthintelwa ngokumnika ukutya nokusela ngaphambi kokuba afakwe inaliti. Ukuba umntwana wakho uziva enesizungu okanye ediniwe, mxelele ukuba avuke kancinci, esebenzisa inkxaso ukuba kuyimfuneko. Ukuba uziva enesizungu, mxelele ukuba ahlale phantsi okanye alale phantsi. Ukuba le meko iyaqhubeka okanye iba mandundu, funa ingcebiso kagqirha.
- Ukuphazamiseka kwesisu nokuhlanza: Abanye abantwana banokuba nokuphazamiseka kwesisu (i-gastroenteritis) okanye ukuhlanza. Ngeli xesha, banike ulwelo oluninzi lokusela kunye nokutya okuncinci okungemnandi, okukhaphukhaphu (umz., ii-crackers, i-toast, iibhanana, isuphu ekhaphukhaphu). Ukuba oku kuyaqhubeka, xelela ugqirha wakho.
- Intlungu yamalungu: Abanye abantwana banokuba nentlungu yamalungu. Thetha nogqirha wakho ngale nto.
- Utshintsho kwiimvavanyo zegazi: Eli yeza linokunyusa izinga lovavanyo lwegazi olubizwa ngokuba yi-alkaline phosphatase. Eli liyeza lokulinganisa ukusebenza kwesibindi okanye amathambo. Kungoko ke, kubaluleke kakhulu ukuqhubeka novavanyo lwegazi njengoko ugqirha wakho ekumisele.
Ezinye izinto ezibalulekileyo ekufuneka uzazi
Kuthatha ixesha elingakanani ukuba eli yeza lisebenze?
Ngokophando, kuthatha iinyanga ezininzi ukubona ukwanda kwesantya sokukhula kwabantwana. Nangona kunjalo, iziphumo zinokwahluka ukusuka kumntwana ukuya komnye. Ngoko ke yiba nomonde kwaye uqhubeke nonyango njengoko ugqirha esitsho. Ugqirha uya kuhlala ejonga inkqubela yomntwana.
Ngubani na lo mayeza angafanelekanga kuye?
Ukuba umntwana wakho uneengxaki ezinxulumene nezintso, qiniseka ukuba uyamxelela ugqirha. Ugqirha usenokugqiba ekubeni anganiki eli yeza kubantwana abaneengxaki zezintso ezinzima.
Ingaba eli liyeza elikhethekileyo?
Ewe. I-Voxzogo liyeza elikhethekileyo.Oko kuthetha ukuba eli asiloyeza onokulifumana kwikhemesti eqhelekileyo. La ngamayeza abiza kakhulu kwizifo ezingaqhelekanga okanye ezintsonkothileyo. Kukho inkqubo ekhethekileyo yokufumana la mayeza. Emva kokuba ugqirha wakho ekunike eli yeza, ikhemesti ekhethekileyo iya kuqhagamshelana nawe ize ikuchazele indlela yokufumana amayeza ekhayeni lakho.
Umyalezo Wokuya Ekhaya
- I-Achondroplasia yimeko yemfuza engeyoyomntwana okanye eyakho. I-Voxzogo lunyango lwanamhlanje noluvunyiweyo lwayo.
- Le yinaliti enikwa phantsi kwesikhumba ngexesha elinye yonke imihla. Jikelezisa iindawo ezifakwe kuzo inaliti yonke imihla.
- Kubaluleke kakhulu: Nika umntwana wakho isidlo esimnandi kunye neglasi yolwelo iyure ngaphambi kokuba afakwe inaliti. Oku kuya kunceda ukuthintela ukwehla koxinzelelo lwegazi.
- Ungaze uzame ukunika umntwana wakho olu gonyo ude ufumane uqeqesho olufanelekileyo kugqirha wakho.
- Kubalulekile ukuya kuzo zonke iintlanganiso zeklinikhi ezicwangcisiweyo kunye nogqirha ukuze kujongwe inkqubela yomntwana kunye nemiphumo emibi.
- Musa ukoyika ukuthetha nogqirha wakho ngayo nayiphi na ingxaki okanye amathandabuzo onawo.
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