Wake wazizwa sengathi ingane yakho ibuthakathaka kancane kunezinye izingane, noma ukuthi inenkinga yokubamba intamo yayo iqonde? Noma mhlawumbe ingane yakho endala iwa njalo noma inenkinga yokukhuphuka izitebhisi? Ungase ucabange ukuthi lezi yizinto ezivamile bese uzilahla, kodwa namuhla sizokhuluma ngesizathu esingathi sína esingaba ngemuva kwazo ngezinye izikhathi. Leso yi -Spinal Muscular Atrophy , noma i-SMA njengoba thina odokotela siyibiza kanjalo.
Kulungile, pho iyini le SMA?
Kalula nje, lesi yisifo esibangelwa izakhi zofuzo. Ukuze imisipha emzimbeni wethu inyakaze futhi isebenze, umyalezo kudingeka uvele ebuchosheni uye kuleyo misipha. Le miyalezo ithwalwa amangqamuzana emizwa akhethekile (ama-motor neurons) emgogodleni wethu. Uma sikhuluma iqiniso, lawa mangqamuzana emizwa yiwo anikeza umyalo emisiphani ukuba "inciphe" futhi "inde."
Ku-SMA, isici sofuzo sibangela ukuthi la maseli ezinzwa abuthakathaka kancane kancane futhi afe. Cabanga ngakho njengocingo oluthwala ugesi luye emshinini kagesi oluwohloka kancane kancane, lunciphisa inani likagesi olungaluthwala. Ngendlela efanayo, njengoba amaseli ezinzwa ebuthakathaka, imiyalezo ayithumela emisipheni nayo iyancipha. Ngenxa yalokho, imisipha iyancipha kancane kancane futhi ilahlekelwe amandla ngenxa yokungasebenzi kahle. Yilokhu esikubiza ngokuthi i-muscular atrophy.
Yiziphi izinhlobo eziyinhloko ze-SMA?
I-SMA ayithinti wonke umuntu ngendlela efanayo. Ihlukaniswe ngezinhlobo eziningana eziyinhloko ngokusekelwe eminyakeni lapho izimpawu ziqala khona kanye nobunzima besifo. Izigaba zokukhula ingane ezifinyelelayo ngesikhathi sokukhula kwayo - njengokubamba intamo yayo, ukuhlala phansi, nokuhamba - zibaluleke kakhulu kulolu hlobo.
Ukuze kube lula ukuqonda, ake sibheke lezi zinhlobo etafuleni.
| Uhlobo lwe-SMA | Ubudala bokuqala kwezimpawu | Izici eziyinhloko kanye nesimo |
|---|---|---|
| Uhlobo 0 | Ngaphambi noma ngokushesha ngemva kokuzalwa | Uhlobo olunzima kakhulu nolungavamile. Ngokuvamile luyabulala. |
| Uhlobo 1 | Kusukela ekuzalweni kuya ezinyangeni ezi-6 | Uhlobo oluvame kakhulu. Ukungakwazi ukuphakamisa intamo. Izingalo nemilenze kuyaxega. Ukungakwazi ukuhlala ngaphandle kokusekelwa. Ubunzima bokuphefumula nokugwinya. |
| Uhlobo 2 | Phakathi kwezinyanga ezi-3 nezi-15 | Ingahlala ngaphandle kokusekelwa, kodwa ayikwazi ukuma noma ukuhamba. Ubuthakathaka buncane ezingalweni kunasemilenzeni. Ubunzima bokuphefumula bungaba khona ngesikhathi sokulala. |
| Uhlobo 3 | Ngemva kwezinyanga ezingu-18 kuya ebudaleni obusha | Uyakwazi ukuhamba nokuma ngokuzimela, kodwa uvame ukuwa, kunzima ukukhuphuka izitebhisi, futhi kunzima ukuphuma esihlalweni. Ngokuhamba kwesikhathi, kungase kudingeke usizo lwabakhubazekile. |
| Uhlobo 4 | Lapho umuntu esemdala (iminyaka engama-20-30) | Uhlobo olungavamile. Ubuthakathaka bemisipha obuncane kanye nobunzima bokuphefumula obuncane bungase buvele. Izimpawu zikhula kancane kakhulu. Isikhathi sokuphila asithinteki. |
Manje ake sixoxe ngezinhlobo ngazinye zalezi ngemininingwane ethe xaxa.
Isifo se-SMA uhlobo 1 (isifo sikaWerdnig-Hoffmann)
Lolu uhlobo oluvame kakhulu nolunzima kakhulu. Laba bantwana babonisa izimpawu ngaphambi kokuba babe nezinyanga ezi-6 ubudala. Ezimweni eziningi, izimpawu ziqala ukuvela ezinyangeni ezi-3. Lokhu kuyinto ebuhlungu kakhulu kumama nobaba. Ingane izizwa ingaphili. Njengodoli ogqokile. Intamo ayikwazi ukubanjwa iqonde. Izitho zomzimba ziyalenga. Njengoba kunzima ukuphuza ubisi ngisho nokugwinya ukudla, ukuntuleka kokudla okunempilo kungavela. Futhi, imisipha esiza ekuphefumuleni ibuthakathaka, ngakho-ke ingozi yokutheleleka kokuphefumula iphezulu. Iqiniso elidabukisayo ukuthi iningi lalaba bantwana aliphili iminyaka emi-2.
Isifo se-SMA sohlobo 2 (isifo saseDubowitz)
Lolu uhlobo lobunzima obuphakathi nendawo. Cabanga nje, ingane yakho ihleli kahle futhi idlala, kodwa ayizami ukuvuka noma ukuhamba ezinyangeni eziyi-6-7. Lolu uhlobo lwesibili lwesimo. Izimpawu zivame ukuqala ngaphambi kokuba ingane ikwazi ukuma futhi ihambe yodwa. Lezi zingane zingase zibe namandla amancane ezingalweni zazo kunasemilenzeni yazo. Kodwa azikwazi ukuma futhi zihambe zodwa. Njengoba zikhula, mhlawumbe zisebusheni bazo, zingase zidinge ukwesekwa ukuze zihlale phansi. Zingase zibe nobunzima bokuphefumula ngesikhathi sokulala, ngakho-ke lokhu kufanele kucatshangelwe. Kuye ngobukhulu bezimpawu, isikhathi sokuphila singase sibe sifushane kunokuvamile.
Uhlobo 3 lwe-SMA (Kugelberg-Welander syndrome)
Lolu uhlobo oluncane kakhulu. Izimpawu zalolu hlobo zivela kusukela eminyakeni eyi-1 1/2 (izinyanga eziyi-18) kuya ebuntwaneni. Lezi zingane zingahamba futhi zime zodwa. Kodwa-ke, inkinga ukuthi ziyawa njalo, ziba nobunzima bokugijima nokugxuma, futhi zikuthola kunzima kakhulu ukuvuka esihlalweni noma ukukhuphuka izitebhisi. Njengoba imisipha iba buthaka ngokuhamba kwesikhathi, zingadinga usizo lwesihlalo sabakhubazekile kamuva ekuphileni. Kodwa izindaba ezinhle ukuthi lezi zingane zingaphila impilo evamile.
I-SMA uhlobo 4 (i-SMA yabantu abadala)
Lolu uhlobo olungavamile kakhulu. Izimpawu ziqala lapho umuntu esemdala, ngokuvamile eminyakeni yama-20 noma yama-30. Ungase ube nobuthakathaka obuncane ezingalweni nasemilenzeni yakho, futhi ngezinye izikhathi ukuphelelwa umoya. Lezi zimpawu zikhula kancane kangangokuthi abanye abantu abazi nokuthi banesifo iminyaka eminingi. Akukuthinti isikhathi sokuphila.
Khumbula, ezimweni ezinjengalezi, into ebaluleke kakhulu ukuxilonga lesi sifo ngokushesha okukhulu bese ucela iseluleko esifanele sezokwelapha.
Wenzani uma ubona izimpawu ezinjengalezi?
Uma usola ukuthi ingane yakho inanoma yiziphi izimpawu ezibalwe kulesi sihloko, sicela ungesabi futhi ngokushesha uxhumane nodokotela ofanelekayo, ikakhulukazi udokotela wezingane. Ungazami ukuzixilonga ngokusekelwe ku-inthanethi noma kumahemuhemu. Lokhu kungaba yingozi. Udokotela uzohlola ingane yakho futhi, uma kudingeka, akuthumelele ukuhlolwa kofuzo ukuqinisekisa uhlobo oluqondile lwesimo. Uma isimo siqinisekiswa, uzokwaziswa ngohlobo oluthile lokuphathwa, ukwelashwa ngokomzimba, kanye nokwelashwa okusha nokusafufusa.
Umlayezo Wokuya Nawe Ekhaya
- I-Spinal Muscular Atrophy (SMA) yisimo esibangelwa ubuthakathaka bemizwa emgogodleni.Kuyisifo esibangelwa izakhi zofuzo esibangela ukuphelelwa amandla kwemisipha .
- Kunezinhlobo eziningana eziyinhloko, kuye ngokuthi izimpawu ziqala nini kanye nobunzima bazo.
- Uma ubona izimpawu zokuthi ingane yakho iyantengantenga, inokukhubazeka kokukhula, noma iwe njalo, ungakushayi indiva lokho.
- Kubaluleke kakhulu ukugwema ukuzihlola bese ubona udokotela ofanelekayo ngokushesha ukuze uthole iseluleko esifanele.
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