Namhlanje siza kuthetha ngonyango oluntsonkothileyo, kodwa olunexesha lanamhlanje abantu abaninzi abangazange beve ngalo. Igama lalo yi-Elivaldogene Autotemcel. Luthengiswa phantsi kwegama elithi SKYSONA. Olu asilo pilisi okanye i-capsule eqhelekileyo. Olu lunyango oluthile lwesifo semithambo-luvo esingaqhelekanga nesinzima esibizwa ngokuba yi-cerebral adrenoleukodystrophy (CALD). Masichaze olu nyango ngendlela elula onokuyiqonda.
Kwenzeka ntoni ngokwenene ngale mithi?
Ukuze siqonde oku, masithathe umzekelo omncinci. Khawucinge ukuba iiseli zemithambo-luvo ezikwingqondo yethu nakwintambo yomqolo zifana neengcingo zombane. Ezi ngcingo zombane zine-sheath yeplastiki (insulation) ezijikelezileyo, enceda umbane ukuba uhambe kakuhle ngaphandle kokuvuza. Ngokufanayo, iiseli zethu zemithambo-luvo zikwanayo ne-sheath yokukhusela ebizwa ngokuba yi-'myelin' ezijikelezileyo. Le sheath yiyo evumela imiyalezo yemithambo-luvo ukuba ihambe ngokukhawuleza nangokuchanekileyo.
Kwisifo esibizwa ngokuba yi-cerebral adrenoleukodystrophy (CALD), isiphene semfuza sithintela umzimba ekuveliseni iproteni efunekayo ukugcina esi sheath 'se-myelin'. Esi sheath sokukhusela siyatshatyalaliswa kancinci kancinci, nto leyo eyonakalisa ukusebenza kwenkqubo yemithambo-luvo.
Ngamafutshane, olu nyango, olubizwa ngokuba yi-Elivaldogene Autotemcel, lubandakanya ukuthatha iiseli emzimbeni wesigulana, ukuziguqula ngokwemfuza kwilebhu, kwaye zinike amandla okuvelisa iproteni engekhoyo. Iiseli eziguquliweyo emva koko zibuyiselwa emzimbeni wesigulana. Oku kukwabizwa ngokuba yi-gene therapy . Oku kunceda ukulawula ukonakala kweempawu.
Izinto ekufuneka ugqirha wakho azi ngaphambi kokuba aqalise olu nyango
Ngenxa yokuba olu nyango luyinkimbinkimbi kakhulu, kubalulekile ukuba iqela lakho lezonyango liyazi kakuhle imeko yakho yempilo. Ngaphambi kokuba uqale unyango, ngokuqinisekileyo kufuneka uxelele ugqirha wakho ukuba unayo nayiphi na kwezi meko:
- Ukuba okwangoku unayo nayiphi na uhlobo losulelo (njengomkhuhlane, umkhuhlane, ukukhwehlela).
- Ukuba une -allergies kweli yeza (elivaldogene autotemcel), amanye amayeza, ukutya, iidayi, okanye izithinteli.
- Ukuba ukhulelwe okanye uzama ukukhulelwa .
- Ukuba uncancisa umntwana wakho .
Lunikwa njani unyango?
Olu asilonyango lwasekhaya. Olu nyango lunikezelwa esibhedlele okanye kwikliniki ekhethekileyo liqela lezonyango eliqeqeshiweyo.
Eli yeza lifakwa emzimbeni njengetyuwa ngomthambo. Lonke eli chiza lenziwa phantsi kweliso elibukhali loogqirha nabahlengikazi.
Ngaphambi kokuba unyango lwakho luqale, uza kunikwa incwadana yolwazi ekhethekileyo ebizwa ngokuba yi-MedGuide . Iqulethe ulwazi oluninzi olubalulekileyo malunga nale yeza, inkqubo kunye neengozi. Kubaluleke kakhulu ukuyifunda nokuyiqonda ngononophelo.
Olu nyango lunikwa nabantwana abangaphezu kweminyaka emi-4 ubudala, kodwa kuqwalaselwa amanyathelo okhuseleko akhethekileyo kunye nemigaqo.
Kuthekani ukuba uthatha amayeza amaninzi kakhulu?
Ekubeni oku kwenziwa phantsi kweliso lezonyango esibhedlele, amathuba okuba oku kwenzeke mancinci kakhulu. Nangona kunjalo, ukuba kukho nakuphi na ukurhaneleka kokuba oku kwenzekile, iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo okanye iYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele kufuneka yaziswe ngoko nangoko.
Izinto ekufuneka ziqwalaselwe ngexesha nasemva konyango
Emva kokufumana olu nyango, oogqirha baya kuhlala bejonga impilo yakho. Ngenxa yoku, kuya kufuneka unyamekele ngokukodwa izinto ezithile.
- Umsebenzi wegazi: Emva konyango, kuya kufuneka uvavanye igazi lakho rhoqo. Oku kuya kujonga ukuba unyango luyasebenza na, ukuba iiseli ezintsha zisebenza kakuhle na, nokuba kukho naziphi na iziphumo ebezingalindelekanga.
- Umngcipheko wokosuleleka: Olu nyango lunokwenza buthathaka okwethutyana amasosha omzimba wakho, nto leyo eyandisa umngcipheko wokosuleleka. Ukuba ubonakalisa iimpawu ezifana nomkhuhlane, ukugodola, ukukhwehlela, okanye umphimbo obuhlungu , musa ukuzenza unyango. Fowunela iqela lakho lezempilo ngoko nangoko . Kwakhona, zama ukuhlala kude nabantu abagulayo kangangoko unako.
- Ukunikela ngegazi: Awunakunikela ngegazi emva kokufumana olu nyango.
- Umngcipheko womhlaza: Ngeendlela zonyango zezakhi zofuzo zanamhlanje ezinje, kukho umngcipheko omncinci kakhulu wokuba nomhlaza wegazi. Musa ukoyika oku, kodwa thetha ngokukhululekileyo ngalo mngcipheko kunye nendlela oza kuhlolwa ngayo ngugqirha wakho.
- Icebiso elikhethekileyo kumadoda: Ukuba uyindoda efumana olu nyango, kufuneka usebenzise ikhondom xa ulala nomfazi onokukwazi ukuzala umntwana. Le ndlela yokuzikhusela kufuneka ilandelwe iinyanga ezi-6 emva konyango. Ukuba ukrokrela ukuba iqabane lakho likhulelwe ngeli xesha, yazisa ugqirha wakho ngoko nangoko.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na imithi, olu nyango lunokubangela iziphumo ebezingalindelekanga. Ezinye zazo zifuna unyango olukhawulezileyo, ngelixa ezinye zisenokuba zezesiqhelo.
| Imiphumela | Inkcazo/Iimpawu |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpendulo ze-allergy | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe, ulwimi okanye umqala. |
| Ukopha | Igazi elikwisitulo okanye indle emnyama, ukuhlanza okufana nekofu egayiweyo, umchamo obomvu okanye omdaka omnyama, amabala amancinci abomvu/mfusa eluswini, kunye nokudumba okuncinci. |
| Usulelo | Umkhuhlane, ukubanda, ukukhohlela, umphimbo obuhlungu. |
| Iimpawu zesifo sokuwa (Ukuxhuzula) | Ukuba nemeko efana nokuxhuzula ( ukuxhuzula ). |
| Iziphumo ebezingalindelekanga ezihlala zingeyongozi, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Iingxaki zenkqubo yokugaya ukutya | Ukuqhinwa, iintlungu zesisu, urhudo, ukuhlanza, isicaphucaphu. |
| Ezinye izifo ezincinci | Ukulahlekelwa ngumdla wokutya, intloko ebuhlungu, izilonda emlonyeni okanye emqaleni kunye nentlungu. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukongeza, ukuba ufumana naziphi na iimpawu ezingaqhelekanga, thetha nogqirha wakho ngazo.
Umyalezo Wokuya Ekhaya
- I-Elivaldogene Autotemcel (SKYSONA) lunyango olukhethekileyo lwe-gene kwisifo esingaqhelekanga seCerebral Adrenoleukodystrophy (CALD).
- Olu nyango lunikezelwa esibhedlele phantsi kweliso leqela loogqirha abaziingcali.
- Ngaphambi konyango, qiniseka ukuba uxelela ugqirha wakho lonke ulwazi lwakho lwempilo (ingakumbi usulelo, i-allergies).
- Lumka kakhulu malunga neempawu zosulelo kunye nokopha emva konyango. Ukuba uneengxaki, yazisa ugqirha wakho ngokukhawuleza.
- Amadoda afumana unyango kufuneka asebenzise ikhondom ngexesha lokwabelana ngesondo lonke ixesha lonyango.
- Musa ukoyika ukuthetha nogqirha wakho ngayo nayiphi na imibuzo okanye iinkxalabo onokuba nazo.
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