Ngezinye izikhathi sibone abantu abafushane kakhulu kunokuvamile, okungukuthi, abafushane, akunjalo? Mhlawumbe kuma-movie, noma ngisho nasempilweni yangempela. Esinye isizathu salokhu kungaba yisimo esibizwa ngokuthi i-Chondrodysplasia. Ungesabi uma uzwa leli gama. Empeleni leli igama elijwayelekile lezifo eziningana ezihlobene nokukhula kwamathambo ezibangelwa izinguquko ezakhiweni zomzimba wethu. Odokotela bavame ukuxilonga lesi simo cishe ngokushesha nje lapho umntwana ezalwa.
Cabanga ngakho, lokhu akuyona nje uhlobo olulodwa lwesifo. Ngakolunye uhlangothi, abanye abantu abanalesi simo bangaphila impilo evamile ngaphandle kwemingcele emikhulu. Isibonelo, labo abake babukela i-'Game of Thrones' bazokwazi umlingiswa kaTyrion Lannister. Umlingisi odlala lowo mlingiswa, uPeter Dinklage, unesifo esibizwa ngokuthi i-Achondroplasia, esingohlobo lwe-Chondrodysplasia. Uphila impilo ephumelelayo negcwele. Kodwa, ngakolunye uhlangothi, kunezinhlobo ezinzima kakhulu nezibuhlungu zalesi simo. Isibonelo yi-Rhizomelic Chondrodysplasia Punctata (RCDP1). Lesi simo sibangela ukukhula okungapheli ezinganeni, izinkinga zamathambo, ukuphazamiseka kwengqondo , kanye ne-cataracts . Izingane eziningi ezinalesi simo esinzima aziphili ngale kobuntwana. Kodwa kukhona ithemba. Abacwaningi bazama ukuthola ikhambi le-RCDP1.
Yiziphi izizathu zalokhu?
Kalula nje, lezi zimo ziwufuzo . Lokhu kusho ukuthi zibangelwa izinguquko noma amaphutha athile kumajini angaphakathi kwamaseli emizimba yethu. Ngezinye izikhathi la maphutha ofuzo angazuzwa kubazali kuya ezinganeni. Isimo esibi esibizwa ngokuthi i-RCDP1 singenye yezimo ezinjalo ezizuzwe njengefa.
Kodwa-ke, uhlobo oluvame kakhulu, njenge-Achondroplasia, luvame ukubangelwa ukuguquka okungahleliwe. Lokhu kusho ukuthi ingane ingakuthola noma ngabe akekho kubazali abanalesi simo.
Ziyini izimpawu zalesi simo?
Ngale kokubukeka komuntu ngokomzimba, izimpawu zincike ohlotsheni lwe-Chondrodysplasia analo. Izimpawu eziyinhloko ubude obufushane (ubufushane bobude) kanye nobukhulu bekhanda obukhulu kunobujwayelekile . Kodwa kunezinye izimpawu ezingavela. Ake sibheke ukuthi ziyini.
| Ingxenye yomzimba lapho kungase kube khona uphawu khona | Inkinga engaba khona |
|---|---|
| Ukuthuthukiswa kobuchopho | Kwezinye izinhlobo, ukukhula kobuchopho kungathinteka futhi ukukhubazeka kwengqondo kungenzeka. Kodwa-ke, ezinhlotsheni ezifana ne-Achondroplasia, ukukhubazeka kwengqondo akubonakali. |
| Isikhumba | Isikhumba siba sibi futhi sibe namaqhubu. |
| Umlomo | Ulwanga oluqhekekile. |
| Amehlo | Ukukhubazeka kokubona okubangelwa yi-cataracts. |
| Umgogodla | Ukwenzeka kokukhubazeka komgogodla. |
Kwenziwa kanjani ukuxilongwa?
Ngokuvamile, udokotela angase asole ukuthi umntwana unalesi simo ngokushesha nje lapho ezalwa, ngoba izimpawu ezifana nezitho ezimfushane kanye nekhanda elikhulisiwe zingabonakala kalula.
Ukuqinisekisa lokhu kusola, udokotela uyala ukuba kwenziwe i-X-ray . I-X-ray ikhombisa ukuthi amathambo ezingalweni nasemilenzeni yengane mafushane futhi abanzi ngendlela engavamile.
Ngaphezu kwalokho, izimo ezifana ne-Achondroplasia zingatholakala ngisho nange -ultrasound scan ngenkathi umntwana esesesibelethweni. Uma ufuna ukuqiniseka ngokuphelele ngokuxilongwa, kukhona ngisho nokuhlolwa kofuzo okukhethekile kwalokho.
Yiziphi izindlela zokwelapha?
Izindlela zokwelapha ingane yakho ezitholayo zizoncika ohlotsheni lwe-Chondrodysplasia enayo. Into ebalulekile okufanele uyiqonde lapha ukuthi izindlela zokwelapha eziningi azikwazi ukukhulisa ubude bengane , kodwa zingasiza ekunciphiseni nasekuphatheni ezinye izinkinga zempilo ezihlobene nayo.
- Uma ingane yakho iphilile, okudingeka ukwenze nje ukuvakashela udokotela wezingane njalo ukuze uhlole impilo yengane yakho. Uma kuvela izinkinga, kuzodingeka unikeze ukwelashwa okudingekayo.
- Ezimweni ezimbi kakhulu, ithimba lochwepheshe lingase lihileleke ekwelapheni ingane. Abantu abaningi, njengabelaphi bezomzimba kanye nochwepheshe bezokudla, kungadingeka bahileleke. Lokhu kwelashwa kuvame ukwenzeka esibhedlela.
Okuningi mayelana nokwelashwa
Kwezinye izimo ezingavamile, ukunikeza ama-hormone okukhula kuye kwasiza ekukhuleni kwamathambo, kodwa akuyona ikhambi eliqinisekisiwe. Ama-hormone okukhula awaphulukisi izimo ezifana ne-achondroplasia.
Abanye abantu basebenzisa ukuhlinzwa kokwelula izitho . Kodwa lokhu kuyinqubo ephikisana kakhulu. Ngoba inezingozi futhi ingaba buhlungu kakhulu. Ezimweni eziningi, lokhu kuhlinzwa kwandisa ukuphakama ngamasentimitha ambalwa kuphela. Ngenxa yokuthi lolu chungechunge lokuhlinzwa ludinga kakhulu ngokomzimba nangokwengqondo, odokotela batusa ukuhlehlisa lokhu kuhlinzwa kuze kube yilapho ingane isikhule ngokwanele ukuqonda futhi ikwazi ukwenza izinqumo zayo.
Yiziphi izinkinga ezingaba khona?
Izinhlobo eziningi ze-chondrodysplasia aziyona ingozi empilweni, kodwa zingabangela izinkinga ezibuhlungu nezihlala isikhathi eside. Udokotela wakho angakusiza ukuthi ubhekane nazo.
| Inkinga | Incazelo elula |
|---|---|
| Ubunzima bokuphefumula | Ubukhulu obuncane bomgodi wesifuba bungabangela ubunzima bokuphefumula. |
| Ubuhlungu emhlane kanye nokubambelela komgogodla | Izinguquko emgogodleni zingabangela ubuhlungu nokuqina. |
| I-stenosis yomgogodla | Ukucindezelwa kwemizwa ngenxa yokuncishiswa komsele lapho intambo yomgogodla idlula khona ngaphakathi komgogodla. |
| Izinkinga ezihlangene | Ubuhlungu bamalunga kanye nobunzima bokunyakaza. |
| Ukutheleleka kwamaphaphu okuvamile | Izinguquko ezindleleni zokuphefumula zingabangela ukutheleleka kwamaphaphu njalo. |
| Ukuquleka | Kwezinye izinhlobo ezinzima, ukuquleka kungabangelwa imiphumela ekukhuleni kobuchopho. |
| Ukuphefumula komoya ngesikhathi sokulala | Ukuyeka ukuphefumula okwesikhashana ngesikhathi sokulala. |
Ungakuthola kanjani ukwesekwa wena kanye nengane yakho?
Uma uphila nalesi simo, ukusekelwa kwakho nomntanakho kubaluleke kakhulu. Abantu abanalesi simo abathandi ukuphathwa njengabantu abakhethekile. Kodwa abantu emphakathini ngezinye izikhathi bazama ukubabandlulula nokungabaqondi kahle. Ikakhulukazi esikoleni, kunethuba elikhulu lokuxhashazwa ontanga.
Ngakho-ke, kuhle kakhulu ukufuna iseluleko ukuze kusizwe ingane ibhekane nalesi simo futhi kusizwe abanye baqonde lokhu. Futhi, kunezinhlangano zokusekelana ezakhiwe yimindeni enezingane ezinjengalezi. Ngazo, ningabelana ngolwazi, nixoxe ngezinto enizibonile, futhi nibe umthombo wamandla komunye nomunye.
Umlayezo Wokuya Nawe Ekhaya
- I-Chondrodysplasia ayisona isifo esisodwa. Yigama elijwayelekile lezifo eziningana zezakhi zofuzo ezithinta ukukhula kwamathambo.
- Ubunzima balesi simo buyahlukahluka kuye ngomuntu nomuntu. Nakuba abanye abantu bangase babe nemiphumela emincane, abanye bangase babe nezinkinga ezinkulu. Abantu abaningi abanezimo ezifana ne-achondroplasia baphila impilo egcwele nephumelelayo.
- Umgomo oyinhloko wokwelashwa akukhona ukwandisa ubude, kodwa ukulawula izinkinga zempilo ezihlobene (njengobuhlungu emhlane, ubunzima bokuphefumula).
- Uma usuyazi ukuthi ingane yakho inalesi simo, kubaluleke kakhulu ukufuna usizo lwethimba lodokotela abangochwepheshe.
- Kanye nokwelashwa, ukwesekwa kwengqondo kanye nokwelulekwa kwengane nomndeni nakho kubaluleke kakhulu. Kubalulekile ukuqinisa ingane ukuze ibhekane nokuhlukunyezwa emphakathini.
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