Njengomama okanye utata, ithemba lakho elikhulu kukuba ngumntwana ophilileyo. Kodwa ngamanye amaxesha, ngezinto esizivayo nesizibonayo, ingakumbi xa sisiva ngezifo ezingaqhelekanga ezichaphazela abantwana, siziva sisoyika kakhulu. Kodwa okubaluleke ngaphezu kokoyika kukuba nokuqonda ngokuchanekileyo nangokulula kwezo zinto. Namhlanje, siza kuthetha ngesifo esinye esingaqhelekanga, kodwa esifanele sisazi njengabazali . Loo nto yiLissencephaly.
Ngamafutshane, yintoni iLissencephaly?
I-Lissencephaly yimeko engaqhelekanga eyenzeka ngexesha lokukhulelwa , xa umntwana ekhula esibelekweni, xa ingqondo yomntwana ikhula. Ngokwesiqhelo, njengoko ingqondo yomntwana ophilileyo ikhula, ikhula imibimbi emininzi phezu kwayo. Cinga ngayo njengokufaka iphepha elikhulu ebhokisini elincinci. Ezi mibimbi zezona zivumela ingqondo ukuba yenze umsebenzi wayo onzima ngokufanelekileyo.
Kodwa kwimeko yeLissencephaly, le mibimbi ayiveli kakuhle phakathi kweveki yesi-9 neye-12 yokukhulelwa. Ngenxa yoko, umphezulu wobuchopho uhlala ubonakala uthambile . Igama elithi "Lissencephaly" lithetha "ingqondo ethambileyo."
Le meko ayibachaphazeli bonke abantwana ngendlela efanayo. Nangona abanye abantwana bekhula ngesantya esiphantse sibe siqhelekileyo, abanye basenokungakhuli ngaphaya komntwana oneenyanga ezi-5 ubudala. Nangona kungekho nyango lwale meko, ukhathalelo oluxhasayo lunokunceda ukulawula iimpawu kwaye lwenze ubomi bube lula emntwaneni. Nangona le meko inokuba yingozi ebomini kwabanye abantwana, abanye abantwana bayasinda baze babe ngabantu abadala.
Ngaba kukho iintlobo ezahlukeneyo zale meko?
Ewe, oku kunokubonwa ngeendlela ezimbini eziphambili.
1. I-Lissencephaly Ezimeleyo: Apha, umntwana une-Lissencephaly kuphela. Akukho nxulunyaniswa nayo nayiphi na enye imeko yezonyango.
2. Ezinxulumene nezinye izifo: Ngamanye amaxesha oku kunokwenzeka njengenxalenye yesifo semfuza.
Makhe sijonge ezinye zeempawu eziphambili zesifo kwitheyibhile engezantsi.
| Igama leSifo | Iimpawu eziqhelekileyo ezinokubonwa |
|---|---|
| Isifo sikaMiller-Dieker | Ibunzi elikhulu, isilevu esincinci, kunye notshintsho lobuso. Ukukhula kancinci kunye nobunzima bokuphefumla. |
| isifo sikaNorman-Roberts | Ukungaboni kakuhle, ukuxhuzula, kunye nokuphazamiseka kwengqondo. |
| Isifo sikaWalker-Warburg | Ubuthathaka obukhulu bemisipha kunye nokuphelelwa ngamandla. |
Zithini izizathu ze-lissencephaly?
Le yimeko engaqhelekanga kakhulu, eyenzeka malunga nomntwana omnye kwabayi-100,000 abazalwayo.
Abaphandi bafumanise ukuba eyona nto ibangela oku sisiphene kwiijini ezimbalwa . Kodwa into ebalulekileyo ekufuneka uyiqonde apha kukuba uninzi lwezi ziphene zejini azizuzwa ngabazali kubantwana . Oku kuthetha ukuba akukho mntu kusapho osenokuba wayenaso esi sifo ngaphambili. Ezi zisenokuba ziinguqu ezenzeka ngokungacwangciswanga kwimilo yejini yomntwana.
Ngamanye amaxesha, abantwana abanale meko abanazo naziphi na ii-genes ezichongiweyo ukuza kuthi ga ngoku. Oku kuthetha ukuba le meko isenokubangelwa zezinye izizathu ze-genetic abaphandi abangazifumaniyo, okanye zezinye izizathu ezingaziwayo.
Ukongeza, uphando oluthile lubonisa ukuba:
- Ezinye izifo ezenzeka kumama ngexesha lokukhulelwa (usulelo lwesibeleko).
- Umntwana osesiswini unesifo sohlangothi .
Izinto ezinjalo nazo zinokubangela oku.
Zingaba yintoni iimpawu zale meko?
Ubunzima kunye neempawu ze-lissencephaly zahluka kakhulu kumntwana ngamnye.
Ngenxa yokukhubazeka kokukhula kwengqondo , uphawu oluphambili olunokubonwa ekuzalweni okanye kungekudala emva koko yintloko encinci ngokungaqhelekanga (i-microcephaly) .
Ezinye iimpawu ziquka:
- Ubunzima bokuginya
- Ukuqaqamba kwemisipha
- Imingeni enzima yengqondo neyomzimba kunye nokulibaziseka kokukhula.
Abanye abantwana basenokungakwazi ukuhlala, ukuma, ukuhamba, okanye ukuqengqeleka. Izihlunu zabo zinokuba buthathaka. Basenokuba nezandla, iminwe, okanye iinzwane ezikhubazekileyo.
Nangona kunjalo, kukho elinye icala kule nto. Kukho iimeko apho abanye abantwana bakhula ngokwesiqhelo baze babonise iingxaki zokufunda ezincinci. Ngoko ke, akulunganga ukucinga ukuba bonke abantwana bayafana.
Izinto ekufuneka uzazi malunga nokuxhuzula
Malunga nabantwana abasi-8 kwabalishumi abanale meko bakhula uhlobo oluthile lokuqunjelwa olubizwa ngokuba yi-infantile spasms . Le yimeko eyingozi kakhulu.
Xa oku kudibana , akubonakali ngathi kukudibana okukhulu, okugungqayo njengoko sihlala sicinga. Endaweni yoko, umntwana usenokuba uyagungqa, ajijeke ngokungathi unesifo sesisu, okanye abonakale esoyika . Abanye abazali banokucinga ukuba oku kubangelwa kukuqunjelwa okanye ukurhawuzelelwa yintliziyo.
Into ebalulekileyo kukuba ezi ntlungu zobuntwana zinzima kakhulu kunendlela eqhelekileyo yokungena. Zingonakalisa ingqondo kwaye zithintele ukukhula komntwana. Ke ngoko, ukuba ubona iimpawu ezinjalo , kubalulekile ukufuna iingcebiso zonyango ngokukhawuleza.
Ukongeza, malunga nabantwana abali-9 kwabali-10 abane-lissencephaly banokuba nesifo sokuwa , imeko ebonakaliswa kukuxhuzula ixesha elide, kunyaka wokuqala wobomi.
Indlela yokuxilonga esi sifo?
Oogqirha basebenzisa kakhulu ii-brain scans ukuze bafumanise esi sifo.
- Iskeni ye-CT
- Iskeni ye-MRI
Ezi scan zibonisa ngokucacileyo indlela obugudileyo ngayo umphezulu wobuchopho.
Xa sele kuqinisekisiwe ukuba kukho isifo, ngamanye amaxesha kwenziwa uvavanyo lwemfuza ukuze kufunyaniswe ukuba yintoni na ebangela ukuba kubekho isiphene semfuza.
Unyango kunye nolawulo lunjani?
Njengoko besitshilo ngaphambili, akukho nyango lwale meko. Kodwa ungazilawula iimpawu zomntwana wakho, wenze ubomi bemihla ngemihla bube lula kangangoko, kwaye unike umntwana wakho ubomi obusemgangathweni. Oogqirha nabazali basebenzisana ukugxila kwezi zinto.
- Unyango lomzimba, unyango lomsebenzi, kunye nonyango lokuthetha: Oku kunceda ukuqinisa izihlunu zomntwana, ukumqeqesha ukwenza imisebenzi yemihla ngemihla, nokuphuhlisa izakhono zonxibelelwano.
- Amayeza okulawula ukulingana:Ukuba umntwana unesifo sokuwa, kubalulekile ukuqhubeka enika amayeza anikwe ngugqirha ukuze alawule isifo sakhe.
- Izixhobo zokuncedisa: Umntwana angasebenzisa izitulo ezinamavili okanye izitulo ezikhethekileyo ezimvumela ukuba ahlale nkqo.
- Ukondla: Abantwana abanengxaki yokuginya banokufuna ukuba kufakwe ityhubhu yokutyisa ngempumlo okanye esiswini ukuze bahambise ukutya ngqo esiswini.
Ubunzima bokuphefumla nokuginya, kunye nokuxhuzula okungalawulekiyo, zezona ngxaki ziphambili ezisongela ubomi kubantwana abanale meko.
Kodwa njengomzali, eyona nto ibalulekileyo ekufuneka uyikhumbule kukuba wonke umntwana wahlukile . Nangona abanye abantwana bengaphili de babe neminyaka eli-10 ubudala, abanye bakhula kakuhle baze babe ngabantu abadala. Kungoko ke, kubaluleke kakhulu ukubona ingcali ukuze ufunde ngakumbi ngemeko yomntwana wakho kunye neenkonzo zenkxaso ezikhoyo.
Umyalezo Wokuya Ekhaya
- I-Lissencephaly yimeko engaqhelekanga kakhulu eyenzeka xa ingqondo yomntwana ingakheki kakuhle ngexesha lokukhulelwa.
- Iimpawu zahluka kakhulu kumntwana ngamnye. Nangona ezinye zinokuba nemiphumo emincinci, ezinye zinokuba neengxaki ezinkulu zomzimba nezengqondo.
- Lumka kakhulu xa umntwana exhuzula , uhlobo lokuqina apho umntwana ebonakala ngathi uyaxhuzula kwaye uyoyika. Ukuba ubona oku, bona ugqirha ngokukhawuleza.
- Nangona kungekho ndlela ithile yokunyanga oku, unyango lomzimba, amayeza, kunye nolunye unyango oluxhasayo lunokunceda umntwana aphile ubomi obungcono.
- Uhambo lomntwana ngamnye lwahlukile, ngoko ke kubalulekile ukufuna isikhokelo kugqirha wezingane ukuze ufumane icebiso elichanekileyo kumntwana wakho, kunokuba umthelekise nabanye.
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