Ungase ukhathazeke, mhlawumbe uze wesabe, ngokukhula kwengane yakho, ikakhulukazi ubude bayo. Kuvamile ukuzizwa ngale ndlela njengomzali ophila nesimo esibizwa ngokuthi i-Achondroplasia. Kodwa awuwedwa. Ngokuthuthuka kwesayensi yezokwelapha, manje sekukhona izindlela ezintsha zokwelapha ezingasiza ngalezi zimo. Namuhla, sikhuluma ngomuthi obizwa ngokuthi i-Voxzogo, olethe ithemba elisha kangaka, ikakhulukazi ezinganeni ezine-Achondroplasia.
Kuyini ngempela i-achondroplasia?
Kalula nje, i-Achondroplasia yisimo sofuzo esibangela ubufushane. Sithinta indlela amathambo ezingane akhula ngayo, ikakhulukazi amathambo amade (asemakhwapheni nasemilenzeni). Yisimo esingavamile kakhulu, esenzeka cishe koyedwa kwabangu-15,000 kuya kwabangu-40,000 abazalwa.
Ezimweni eziningi, lokhu akuyona into ezuzwe njengefa kubazali, kodwa kuyinto eyenzeka emzimbeni wengane ngenxa yoshintsho olusha lwezakhi zofuzo (ukuguqulwa kwezakhi zofuzo). Ngakho-ke ungazizwa unecala ngalokhu. Lesi simo singabangela izinkinga ezengeziwe zempilo njengoba ingane ikhula, njengokukhuluphala ngokweqile, izifo zendlebe, kanye nezinkinga zemizwa emgogodleni nasebuchosheni.
Kunezimpawu eziningana ezivamile ezingabonakala enganeni ene-achondroplasia.
| Ingxenye yomzimba | Isici esibonakalayo |
|---|---|
| Izandla nezinyawo | Ukufushane kwezingalo nemilenze uma kuqhathaniswa nomzimba wonke. |
| Ikhanda | Ukuba nekhanda nebunzi elikhulu kunelijwayelekile. |
| Impumulo | Ukuba nekhala eliyisicaba. |
| Umgogodla | Ukubona umgogodla ogobile. |
| Imilenze | Imilenze egobile. |
Isebenza kanjani iVoxzogo?
Ukuze siqonde lokhu, sidinga kuqala ukufunda okuncane ngama -growth plate . Cabanga ngala ma-growth plate asekugcineni kwamathambo ethu amade njengendawo lapho kubekwa khona i-asphalt entsha njalo lapho kwakhiwa umgwaqo. Enziwe ngezicubu eziqinile neziguquguqukayo ezibizwa ngokuthi i-cartilage. Njengoba ingane ikhula, le-cartilage iphenduka ithambo, futhi ithambo liyakhula. Lapho ingane isikhule ngokugcwele, la ma-growth plate ayavaleka, futhi ukukhula kokuphakama kuyama.
Ezinganeni ezine-achondroplasia, ukuguquka kwezakhi zofuzo (i-DNA) kuphazamisa enye yezinhlelo zomzimba zokudlulisa imiyalezo. Kunezinhlelo ezimbili zemiyalezo emzimbeni wethu ezithinta ukukhula kwamathambo:
1. Uhlelo olwandisa ukukhula kwamathambo.
2. Uhlelo olunciphisa (olumisa) ukukhula kwamathambo.
Ku-achondroplasia, ushintsho lwezakhi zofuzo lubangela ukuthi uhlelo lokubonisana olunciphisa ukukhula kwamathambo lube lusebenza ngokweqile.
Lokho okwenziwa yi-Voxzogo ukukhuthaza uhlelo lokubonisa olukhuthaza ukukhula kwamathambo futhi lulawule umphumela wohlelo olubambezela ukukhula. Ngamanye amazwi, lo muthi wandisa isignali ethi "Go" yokukhula kwamathambo.
Umgomo walokhu kwelashwa ukusebenzisa lo muthi ngesikhathi amapuleti okukhula kwengane evulekile, okuyisiza ukuthi ifinyelele ukukhula okuphezulu. Lapho amapuleti okukhula evala, okusho ukuthi ingane ayikhuli, umuthi uyamiswa. Lokhu kunqunywa udokotela wakho.
Uyisebenzisa kanjani le mithi?
I-Voxzogo iwumjovo onikezwa ngaphansi kwesikhumba sengane yakho nsuku zonke, cishe ngesikhathi esifanayo nsuku zonke . Yenzelwe ukuthi ukwazi ukuwunikeza ekhaya.
- Izindawo zokufaka umjovo: Lokhu kufakwa ngaphansi kwesikhumba sengane yakho. Ungasebenzisa ithanga lengane yakho, isisu (cishe amasentimitha amabili ukusuka enkabeni), izinqe, noma ngemuva kwengalo yayo engenhla .
- Into ebaluleke kakhulu: Ungaqhubeki ujova endaweni efanayo. Uma ujova endaweni eyodwa namuhla, jova endaweni ehlukile kusasa. Lokhu sikubiza ngokuthi 'ukujikeleza kwendawo yomjovo'. Lokhu kunganciphisa ukungakhululeki okufana nokubomvu nobuhlungu. Ungajovi ezindaweni ezinesikhumba esivuvukile, esinamanxeba, esibomvu, noma esiqinile.
- Okumele ukwenze: Ihora elilodwa ngaphambi komjovo, phakela ingane yakho ukudla okumnandi bese uyinika ingilazi enkulu (cishe ama-ounces angu-8-10) amanzi, ubisi, noma ujusi wezithelo. Lo muthi ngezinye izikhathi ungabangela umfutho wegazi ophansi, okungakwenza uzizwe ukhathele noma unesiyezi. Ukunikeza ingane yakho ukudla noketshezi kusengaphambili kunganciphisa kakhulu le ngozi.
Umthamo womuthi onikezwa ingane unqunywa isisindo somntwana. Kufanele utshele udokotela uma isisindo somntwana sishintsha. Udokotela wakho uzokuqeqesha ukuthi ungamjova kanjani umntwana wakho ngqo. Ungalokothi uzame ukukwenza lokhu wena uze uthole lolo qeqesho. Funda futhi incwajana yemiyalelo eza nomuthi ngokucophelela.
Yimiphi imiphumela emibi engaba khona?
Njenganoma yimuphi umuthi, i-Voxzogo ingabangela imiphumela emibi. Kubalulekile ukuqaphela lokhu.
- Ukusabela kwendawo yomjovo: Lona umphumela ovame kakhulu. Kungase kube nokubomvu, ukuvuvukala, ukulunywa, ukushaqeka, noma ubuhlungu endaweni yomjovo. Lokhu kungelashwa ngokufaka i-compress epholile endaweni. Qiniseka ukuthi ukhuluma nodokotela wakho ngaphambi kokuthatha noma yimuphi umuthi wobuhlungu noma ukulunywa.
- Umfutho Wegazi Ophansi: Njengoba sishilo ekuqaleni, lokhu kungcono ukukugwema ngokunikeza ukudla nokuphuza ngaphambi komjovo. Uma ingane yakho izizwa ididekile noma ikhathele, yitshele ukuthi ivuke kancane, isebenzisa ukwesekwa uma kudingeka. Uma izizwa ididekile, yitshele ukuthi ihlale noma ilale phansi. Uma lesi simo siqhubeka noma siba sibi kakhulu, funa iseluleko sikadokotela.
- Ubuhlungu besisu nokuhlanza: Ezinye izingane zingase zibe nobuhlungu besisu (i-gastroenteritis) noma ukuhlanza. Phakathi nalesi sikhathi, zinike uketshezi oluningi lokuphuza kanye nokudla okuncane okuthambile, okulula (isib. ama-crackers, i-toast, ubhanana, isobho elincane). Uma lokhu kuqhubeka, tshela udokotela wakho.
- Ubuhlungu bamalunga: Ezinye izingane zingase zizwe ubuhlungu bamalunga. Khuluma nodokotela wakho ngalokhu futhi.
- Izinguquko ekuhlolweni kwegazi: Lo muthi ungakhuphula izinga lokuhlolwa kwegazi okubizwa ngokuthi i-alkaline phosphatase. Lokhu kuyindlela yokulinganisa ukusebenza kwesibindi noma kwamathambo. Ngakho-ke, kubaluleke kakhulu ukuqhubeka nokuhlolwa kwegazi njengoba kunqunywe udokotela wakho.
Ezinye izinto ezibalulekile okufanele uzazi
Kuthatha isikhathi esingakanani ukuthi lo muthi usebenze?
Ngokusho kocwaningo, kuthatha izinyanga eziningana ukubona ukwanda kwezinga lokukhula kwezingane. Kodwa-ke, imiphumela ingahluka kuye ngengane. Ngakho-ke yiba nesineke futhi uqhubeke nokwelashwa njengoba udokotela esho. Udokotela uzohlala eqapha intuthuko yengane.
Ngubani lo muthi ongafaneleki?
Uma ingane yakho inezinkinga ezihlobene nezinso, qiniseka ukuthi uyamazisa udokotela. Udokotela angase anqume ukunganiki lo muthi ezinganeni ezinezinkinga zezinso ezinzima.
Ingabe lo umuthi okhethekile?
Yebo. I-Voxzogo iyimithi ekhethekile.Lokho kusho ukuthi lokhu akuwona umuthi ongawuthola ekhemisi elivamile. Lena imithi ebizayo yezifo ezingavamile noma eziyinkimbinkimbi. Kunenqubo ekhethekile yokuthola le mithi. Ngemva kokuba udokotela wakho ekunike lo muthi, ikhemisi elikhethekile lizokuthinta futhi likuchazele ukuthi ungawuletha kanjani umuthi ekhaya lakho.
Umlayezo Wokuya Nawe Ekhaya
- I-Achondroplasia yisimo sofuzo esingeyona iphutha lengane noma elakho. I-Voxzogo iyindlela yokwelapha yesimanje evunyelwe.
- Lona umjovo onikezwa ngaphansi kwesikhumba ngesikhathi esifanayo nsuku zonke. Jikelezisa izindawo zomjovo nsuku zonke.
- Kubaluleke kakhulu: Nika ingane yakho ukudla okumnandi kanye nengilazi yoketshezi ihora ngaphambi komjovo. Lokhu kuzosiza ekuvimbeleni ukwehla komfutho wegazi.
- Ungalokothi uzame ukunikeza ingane yakho lo muthi wokugoma kuze kube yilapho usuthole ukuqeqeshwa okufanele kudokotela wakho.
- Kubalulekile ukuya kuzo zonke izikhathi zokubonana nodokotela emtholampilo ukuze kuqashwe inqubekela phambili yengane kanye nemiphumela emibi.
- Ungesabi ukukhuluma nodokotela wakho nganoma yiziphi izinkinga noma ukungabaza onakho.
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