Ingabe ingane yakho nayo inalesi simo esibucayi? Ake sifunde nge-SCID (Severe Combined Immunodeficiency)!

Ingabe ingane yakho encane ihlala igula? Ingabe ngisho nomkhuhlane omncane uphenduka into engathi sína? Ngezinye izikhathi, njengabazali, sikhathazeka kakhulu ngalezi zinto. Namuhla, sizokhuluma ngesimo esingavamile esesabekayo nesilawulekayo uma ninolwazi olufanele. Sibizwa ngokuthi i-SCID (Severe Combined Immunodeficiency). Leli gama lizwakala liyesabisa kancane, kodwa ake sixoxe ngalo ngokuningiliziwe nangokulula.

Kuyini i-SCID (Severe Combined Immunodeficiency)? Ake sikuqonde kalula.

Kalula nje, i-SCID yisimo esingavamile kakhulu . Okwenzekayo ukuthi lapho kuzalwa izingane, amasosha omzimba azo, alwa nezifo, abuthakathaka kakhulu noma angabi khona nhlobo. Cabanga ngesimiso sethu somzimba njengebutho elivikela izwe lethu. Yilolu hlelo olusivikela ngokulwa nezitha (okungukuthi amagciwane) ezivela ngaphandle. Ngakho-ke, leli "butho" lomntwana one-SCID libuthakathaka kakhulu, noma cishe alikho nhlobo.

Lokhu kubizwa ngokuthi isifo esiyinhloko sokuntuleka kwamasosha omzimba . Lokho kusho ukuthi kuyinto ekhona lapho kuzalwa. Ngakho-ke, ezinganeni ezine-SCID, ngisho nesifo esincane esingavamile ukusinaka, njengomkhuhlane, kunzima ukusinqoba. Uma singelashwa, lesi simo singasongela ukuphila phakathi nonyaka noma emibili. Yingakho kubaluleke kangaka ukuqaphela lokhu.

Kuyini ukuntuleka komzimba "okuhlanganisiwe"?

Isimiso sethu somzimba sokuzivikela sifana namandla okuzivikela emzimbeni wethu. Lapho izinto zakwamanye amazwe, njengegciwane, amabhaktheriya , isikhunta , i - protozoa , noma ubuthi, zingena emzimbeni, leli butho lokuzivikela liyazibona bese liyalwa. Amasosha amakhulu kulo mlo amaseli amhlophe egazi . Phakathi kwawo , ama-lymphocyte akhethekile. Kunezinhlobo ezintathu zama-lymphocyte:

• Amaseli e-T
• Amaseli e-B
• Amaseli Okubulala Emvelo (amaseli e-NK)

Ezinganeni ezine-SCID, la ma-T-cell avame ukuntuleka noma angabi khona nhlobo. Ngenxa yokuthi ama-B-cell adinga usizo kuma-T-cell ukuze asebenze kahle, lapho ama-T-cell elahleka, ama-B-cell nawo awasebenzi kahle. Yingakho kubizwa ngokuthi "okuhlanganisiwe" - ngoba kuyinhlanganisela yezinhlobo eziningana ezibalulekile zamaseli omzimba.

Kunezinhlobo ezahlukene ze-SCID, kuye ngohlobo lwamaseli omzimba ingane engekho kuwo. Kodwa zonke lezi zinhlobo ziyingozi ngokulinganayo. Odokotela bazochaza ukuthi ingane yakho inaluphi uhlobo.

Ivame kangakanani i-SCID?

I-SCID empeleni iyisimo esingavamile kakhulu.Isibonelo, e-United States, lesi simo sithinta cishe ingane eyodwa kwezingu-50,000 ezizalwa minyaka yonke.

Kodwa uma uthola ukuthi ingane yakho inale nto efana nale, ukuthi ayivamile kangakanani, akunjalo? Kuyesabeka kakhulu, kuyadabukisa kakhulu. Uma uzwa ngesimo esifana ne-SCID, akulona nje igama, kuba ngokoqobo okunomthelela omkhulu empilweni yakho.

Ziyini izimpawu ze-SCID?

Ngezinye izikhathi ingane ene-SCID ingase ingabi nazo izimpawu ezithile zangaphandle ekuqaleni. Kodwa-ke, izimpawu ezivame kakhulu zifaka:

• Isisindo sengane asikhuphuki kahle.
• Uhudo olungapheli.
• Izifo ezivame kakhulu nezinzima.

Lokhu kungenxa yokuthi amasosha omzimba engane abuthakathaka kakhulu, ngakho-ke awasabeli kahle ekuguleni. Lokhu kusho ukuthi ingane yakho inamathuba amaningi okugula kunezinye izingane. Futhi, uma igula, izimpawu zayo zingase zibe zimbi kakhulu kunezinye.

Izingane ezine-SCID zisengozini enkulu yokuthola zonke izinhlobo zokutheleleka. Lokhu kufaka phakathi:

• Ukutheleleka ngamagciwane
• Ukutheleleka ngegciwane
• Ukutheleleka kwesikhunta
• Ukutheleleka kwezimuncagazi

Nakuba noma yikuphi ukugula kungaba kubi kakhulu, kunezinhlobo eziningana zokutheleleka ezivame kakhulu ezinganeni ezine-SCID:

• Izifo zemvubelo ezifana ne-thrush noma i-diaper rash emlonyeni nasolimini.
• Inqubulunjwana.
• Amaqhubu azungeze umlomo (Izilonda zomkhuhlane - i-herpes simplex).
• Ukutheleleka kwendlebe.
• Inyumoniya.
• I-Meningitis (umkhuhlane wobuchopho).

Uma ingane yakho iqhubeka nokuba nalezi zimpawu, kufanele ubonane nodokotela ngokushesha.

Yini ebangela i-SCID?

I-SCID iyisifo sofuzo . Lokho kusho ukuthi ibangelwa ukushintshashintsha kwezakhi zofuzo , noma nje izinguquko ezakhiweni zethu zofuzo. Ososayensi bathole izinguquko zofuzo ezingaphezu kweshumi nambili ezinjalo ezingabangela i-SCID.

Lezi zinguquko zofuzo zizuzwa kubazali ezinganeni. Zingazuzwa njenge- autosomal recessive noma i-X-linked .

• I-Autosomal recessive isho ukuthi ukuze ingane ibe nalesi simo, kumele izuze ifa lofuzo oluguquliwe kunina nakuyise.
• I-X-linked SCID ibangelwa ukuguquka kwezakhi zofuzo ku-chromosome X. Ngokuvamile ithinta abafana kakhulu, ngoba abafana bane-chromosome eyodwa X, kuyilapho amantombazane ene-chromosome ezimbili X.

Yiziphi izinkinga ezingaba khona ze-SCID?

Inkinga enkulu neyingozi kakhulu ukuthi ingane ayinaso isimiso somzimba esiqinile sokulwa nezifo. Njengoba umzimba wengane ungakwazi ukulwa ngisho nokutheleleka okuncane, ingozi yokuthola izinkinga ezinkulu iphakeme kakhulu kunezinye izingane.

Ngisho nezifo ezingavamile ukuba zimbi kakhulu zingabangela izinkinga ezisongela ukuphila enganeni ene-SCID.

Uma lesi simo singatholakalanga futhi singalashwa ngesikhathi sokuzalwa, i-SCID ivame ukuba yingozi.

Odokotela bayixilonga kanjani i-SCID?

Odokotela baxilonga i-SCID ngokuhlolwa kwegazi . Lokhu kuhlolwa kwenziwa ngokuthatha isampula yegazi elincane esithendeni somntwana ngemva nje kokuzalwa.

Ezinye izibhedlela eSri Lanka nazo zenza ukuhlolwa okunjalo ezinganeni ezisanda kuzalwa, ikakhulukazi uma othile emndenini wake waba nezimo ezinjalo ngaphambili. Lokhu kubaluleke kakhulu, ngoba uma lesi sifo sitholakala kusenesikhathi, ukwelashwa kungaqalwa ngaphambi kokuba kuvele izifo ezinkulu.

Ingabe ikhona indlela yokwelapha i-SCID?

Yebo, kukhona ukwelashwa kwe-SCID. Izingane ezine-SCID zidinga ukufakelwa i-stem cell noma ukufakelwa umnkantsha ngokushesha okukhulu. Lokhu kuhilela ukufaka ama-stem cell anempilo avela kumuntu onikelayo emzimbeni womntwana. La maseli anempilo asiza ingane ukwakha isimiso somzimba esisha nesiqinile esingalwa nezifo.

• Abanikeli abangcono kakhulu yizingane zakubo ezingenayo i-SCID.
• Uma engekho umuntu onjalo, odokotela bahlola izindawo zokubhalisa amaseli e-stem . Lezi yizinqolobane zamaseli e-stem anikelwe ngumphakathi.

Ngesikhathi ulinde ukufakelwa i-stem cell, ingane yakho ingadinga ezinye izindlela zokwelapha. Isibonelo:

• Ama-antibiotic - Vimbela ukutheleleka ngamagciwane.
• Ama-antiviral - Vimbela ukutheleleka ngegciwane.
• Ama-Antifungal - Vimbela ukutheleleka kwesikhunta.
• Ukufakwa kwe-IVIG - Lokhu kwenziwa ngokunikeza ama-antibodies avela ngaphandle komzimba ukuvikela ezifweni.
• Ukwelashwa ngezakhi zofuzo - Lokhu kuseyindlela yokwelapha yokuhlola, kodwa kungase kuphumelele kwezinye izinhlobo ze-SCID.

Konke lokhu kuyindlela yokwelapha yesikhashana, i-SCID ayikwazi ukwelapheka ngokuphelele. Okuwukuphela kwendlela yokwelapha i-SCID ukufakelwa iseli le-stem.

Ngesikhathi elinde ukufakelwa i-stem cell, ingane ingadinga ukufakwa endaweni yokwahlukaniswa engenamagciwane . Lokhu kusho ukuthi konke okungena ekamelweni lengane kumele kuhlanzwe amagciwane. Lokhu kwenzelwa ukuvikela ingane kumagciwane.

Abanye abantu babiza i-SCID ngokuthi “isifo sengane esinama-bubble” ngoba umntwana ugcinwa ebhamuzeni elivikelayo. Kodwa leli gama alinembile ngokwezokwelapha, futhi lingalimaza kokubili ingane kanye nabazali. Awenzanga lutho olubi, futhi impilo yengane yakho akuyona into okufanele ithathwe kalula.

Yini okufanele ngiyilindele uma ingane yami ine-SCID?

I-SCID yisimo esingaba yingozi uma singelashwa ngokushesha. Ngakho-ke, kubaluleke kakhulu ukuthola ngokushesha ukuthi ingane yakho ine-SCID. Uma odokotela besheshe bakwazi ukuthola lesi sifo futhi badlulisele ingane ekufakweni kweseli le-stem, kulapho amathuba okusindisa impilo yengane eba ngcono khona.

Ungase ungakwazi ukubamba nokugona ingane yakho ngendlela ongathanda ngayo. Uma ingane yakho isendaweni engenamagciwane, ehlukanisiwe, kuzodingeka futhi ulandele imithetho eqinile yokuhlanzeka ukuze uvikele ingane yakho emagciwaneni. Odokotela bazochaza konke lokhu kuwe. Bazokutshela nokuthi yini ongayilindela ngaphambi nangemva kokufakelwa i-stem cell.

Ingakanani iminyaka yokuphila kwengane ene-SCID?

Ngaphandle kokwelashwa, izingane ezine-SCID zivame ukufa zingakapheli unyaka noma emibili. Kodwa-ke, izingane ezifakelwe amaseli e-stem ngempumelelo zingaphila impilo evamile. Uma imizimba yazo isinohlelo lokuzivikela oluqinile noluphelele, ngokuvamile azibi nezinkinga zesikhathi eside.

Ingabe i-SCID ingavinjelwa?

I-SCID ibangelwa ukuguquka kwezakhi zofuzo esingenakukwazi ukuzilawula, ngakho-ke akukho esingakwenza ukuyivimbela. Uma unomlando womndeni walesi simo sezakhi zofuzo, khuluma nodokotela wakho mayelana nokuthola ukwelulekwa kwezakhi zofuzo ngaphambi kokuba nomntwana.

Kufanele ngimbone nini udokotela?

• Uma ingane yakho igula njalo, noma ikhombisa izimpawu ezinzima ngesikhathi sokugula, bona udokotela ngokushesha.
• Uma usuvele wazi ukuthi ingane yakho ine-SCID, tshela udokotela wakho ngokushesha uma ubona noma yiziphi izinguquko empilweni yengane yakho (isib. umkhuhlane, ukukhwehlela, isifo sohudo). Njengoba umzimba wengane yakho ungakwazi ukulwa nezifo ngokwawo, kuyaphuthuma ukuyinika ama-antibiotic noma eminye imithi ngokushesha.

Yimiphi imibuzo okufanele ngiyibuze udokotela wami?

Kuvamile ukuzizwa ukhungathekile futhi ushaqekile lapho uthola ukuthi ingane yakho ine-SCID. Kodwa ungesabi ukubuza udokotela wakho noma yimiphi imibuzo onayo. Kubalulekile ukucaca ngakho konke okwamanje. Ungase ubuze imibuzo efana nale:

• Ingabe ingane yami ine-SCID noma esinye isimo sokuntuleka kwamasosha omzimba?
• Ingabe ingane yami kuzodingeka igcinwe endaweni yokuhlukaniswa engenamagciwane?
• Ingane yami izodinga nini ukufakelwa i-stem cell?
• Yiziphi izinguquko noma izimpawu okufanele ngiziqaphele kakhulu enganeni yami?

Khumbula, kubaluleke kakhulu ukuhlela ukufakelwa kwe-stem cell yengane yakho ngokushesha okukhulu. Futhi, unelungelo lokuqonda konke okwenzekayo. Odokotela bazochaza konke kuwe futhi bakutshele ukuthi yini ongayilindela.

Ekugcineni, umyalezo okufanele uwuthathe uye ekhaya:

I-SCID (Severe Combined Immunodeficiency) iyisimo esibi nesisabekayo. Kodwa-ke, ukuqwashisa kusenesikhathi, ukufuna iseluleko sezokwelapha ngokushesha nje lapho kuvela izimpawu, kanye nokuthola ukwelashwa okufanele kungasindisa impilo yengane.

• Ukuxilongwa kusenesikhathi: Kubaluleke kakhulu ukuhlonza i-SCID ngokuhlolwa kwengane esanda kuzalwa noma ngokushesha nje lapho kuvela izimpawu.
• Ukufakelwa kwamaseli esiqu: Lena yindlela eyinhloko nephumelela kakhulu yokwelapha i-SCID.
• Indawo ephephile: Kubalulekile ukuvikela ingane ezifweni ngesikhathi sokwelashwa.
• Amandla engqondo: Lesi kungaba isikhathi esinzima njengomzali. Funa usizo kodokotela, emndenini, kanye nabeluleki.

Awuwedwa. Ngokuthuthuka kwesayensi yezokwelapha, izingane ezine-SCID manje sezingakwazi ukuphila impilo enempilo negcwele. Hlala uqinile futhi unethemba.

` Ukungavikeleki komzimba, i-SCID, izifo zobuntwana, izifo zofuzo, ukufakelwa umnkantsha wamathambo, ukuntuleka kwamasosha omzimba, izifo ezithelelanayo