Isifo SikaHuntington—Ukuqonda Lo Mnqa Ukwimizila Yemfuza

“Ukutshata kwethu noJohnny, eneneni ndandicinga ukuba siya kuhlala sonwabile ixesha elide. Kodwa ngokuthe ngcembe ubuntu bale ndoda inothando nenkathalo batshintsha ngokupheleleyo. Waqala wagqajukelwa ngumsindo ngendlela engalawulekileyo. Ekuhambeni kwexesha, uJohnny kwafuneka asiwe kwisibhedlele sabagula ngengqondo, apho wafela khona ekugqibeleni. Kwiminyaka kamva safumanisa ukuba lo Nongqawuse wesifo esasimthwaxa wayenegama—isifo sikaHuntington.”—UJanice.

AMAWAKAWAKA abantu ehlabathini lonke athwaxwa sisifo sikaHuntington (iHD [Huntington’s disease]), ingxaki enento yokwenza nemizila yemfuza yenkqubo yemithambo-luvo. Ekubeni iHD iyinto efuzwayo, isoloko ithwaxa ngaphezu kwelungu elinye lentsapho. UJanice uthi: “Emva kokufa kukaJohnny, ndaphulukana noonyana bam abathathu nentombi enye ngenxa yesifo sikaHuntington, yaye nabathathu kubazukulwana bam banaso. Bendingabi naxesha lakukhalela elinye ilungu lentsapho, kuba bekusithi kungekudala kulandele elinye.”

Seso sizathu esibangele kwathiwa iHD “yinto ehlasimlisa umzimba,” kungekuphela nje kumntu onayo kodwa nakwabo bamele bamnyamekele. Yintoni kanye iHD? Banokuncedwa njani—abo banayo—nabo babanyamekelayo?

Iimpawu Zayo

Njengoko sithiywe ngoGqr. George Huntington, owathi ngowe-1872 wabona iimpawu zaso zokuqala, isifo sikaHuntington sibonakala ngotshintsho olungephi kubuntu nakwisimilo somntu oluya lucaca njengoko esi sifo sihambela phambili. Olu tshintsho lususela kwimo nasekucaphukeni noxinezeleko nomsindo onogonyamelo. Kwakhona abo banesi sifo banokuzibona sele berhawuzela nokungazinzi kwezandla neenyawo. Udla ngokungakwazi ukuzilawula yaye umntu onesi sifo udla ngokuba tatasholo. Kuba nzima ukuthetha. Kuba nzima ukuginya, yaye amandla akhe enkumbulo nokunikela ingqalelo ayaphelelwa. Ukufunda, ukulungelelanisa nokucombulula iingxaki—zinto ezo eziqhelekileyo—ngoku ziba ngumthwalo, okanye angakwazi ukuzenza.a

Iimpawu zeHD ziyahlala yaye ziya zisiba mandundu ngalo lonke ixesha lokuphila komguli.b Ethanda engathandi, kuya kufuneka awushiye umsebenzi wakhe yaye akasayi kuphinda akwazi ukuzinyamekela. Idla ngokuba yintlungu engathethekiyo le kumntu oneHD. Omnye owayenesi sifo ogama linguBill uthi: “Bendidla ngokwakha izindlu. Ngoku akukho nto ndiyenzayo. Ndidandatheke gqitha.”

Ewe, kusenokuba buhlungu kumntu oneHD ukubona umzimba namandla akhe engqondo esihla kancinane. Kwakhona kunokubangela intlungu kothandekayo wakhe ukumbukela egqitywa sesi sifo singenalusini. Kunokwenziwa ntoni ke, ukuze kuxhaswe umntu oneHD?

Ukuxhasa Umguli

Ngoxa lungekho unyango lweHD, ukunyanyekelwa ngendlela efanelekileyo komguli kuye kwanceda abaninzi bahlangabezana neempawu zesi sifo. UGqr. Kathleen Shannon uthi: “Oku akusithinteli esi sifo ekubanqenqetheni, kodwa ubukhulu becala kuphucula ubomi babaguli.”

Ngokomzekelo, abanye abantu abaneHD baye bancedwa lunyango olulawula ukuxhuzula luze lunciphise ukuxinezeleka. Noncedo lwengcali ngezondlo lunokuba yingenelo. Ngoba? Ngenxa yokuba abantu abaneHD badla ngokuba nengxaki yokuhla emzimbeni, yaye kudla ngokufuneka batye ukutya okunentswane eninzi ukuze bahlale benemizimba efanelekileyo.

Ngobulumko, ezinye iintsapho ziye zakwazi ukunceda umguli ahlangabezane nezinto ezintsha ezimenza asikelwe umda. Ngokomzekelo, uMonica uthi: “Njengoko kwakusiya kuba nzima ukuthetha kutata, sakhangela iindlela zokuva oko wayekufuna.” UMonica nentsapho yakowabo benza incwadi enamaphepha angabotshwanga ebunjwe ngekhadibhodi, phepha ngalinye layo linegama elinye okanye umfanekiso. UMonica uthi: “Sambandakanya utata kuyo yonke le nto. Wancedisa ekukhetheni imifanekiso namagama.” Ngenxa yesi sixhobo sitsha, utata kaMonica uyakwazi ukunxibelelana nabo ngokwalatha into ayifunayo angakwaziyo ukuyibiza.

Kwanokuba umguli uhlala ekhayeni lakhe okanye kwikhaya labagula kakhulu, kubalulekile ukuqhubeka enxibelelana nentsapho nabahlobo bakhe. UJanice uthi: “Kusenokuba nzima ukutyelela abo sele begqitywa yiHD, kodwa abantwana bam babeba noxabiso gqitha xa abahlobo babedla ngokudlula nje babakhuthaze.” Okulusizi kukuba, maxa wambi olu hlobo lwenkxaso ludla ngokungasiwa so. UBeatrice onomyeni oneHD uthi: “Maxa wambi sidla ngokuvakalelwa kukuba silahlwe kwesinomhlwa. Umyeni wam uya kukuxabisa gqitha ukuba, izihlobo bezinokudlula nje zimbulise!”

Lilonke, yintoni eyona nto ifunwa ngabantu abaneHD? UBobby, onesi sifo nongomnye wamaNgqina kaYehova uthi: “Bafuna ukuqondwa.” Wongezelela athi: “Abazalwana noodade abangamaKristu ebandleni bayayiqonda into yokuba kunokuthabatha umzuzu okanye emibini ukuba ndicinge amagqabaza kwiintlanganiso. Abakhathazeki xa ndidandatheka ndize ndibe nomsindo, ekubeni ezo izezinye zeempawu zesi sifo.”

Ukuxhasa Abo Babanyamekelayo

Kambe ke, nabo babanyamekelayo kufuneka baxhaswe, kuba amaxesha amaninzi basoloko bexhalabile. UJanice uthi: “Usoloko uxhalabele ukhuseleko lomguli. Njengoko imeko isiba mandundu, uya ungakwazi ukunceda.”

Ngokucacileyo, abo babanyamekelayo kufuneka bakhuthazwe. UBeatrice uchaza enye indlela okunokwenziwa ngayo oku. Uthi: “Andinakumshiya yedwa umyeni wam, ibe rhoqo xa ndimenywa kwimbutho ethile, kuye kufuneke ndithi, ‘Ndiyabulela ngokundimema, kodwa andinakubakho.’ Hayi indlela ebekuya kuba kuhle ngayo ukuba umhlobo ebenokuthi, ‘Mhlawumbi unyana wam okwishumi elivisayo okanye umyeni wam unokuhlala nomyeni wakho kangangethuba elithile.’!” Ngokuqinisekileyo, abo babanyamekelayo bayaluxabisa ulwazelelelo olunjalo!—1 Petros 3:8.

Njengoko iHD ifikelela emanqwanqweni, lowo unyamekela umguli kusenokufuneka enze oko kusenokuba sisigqibo esinzima kunazo zonke. UJanice uthi: “Ukunyanzeleka ukuba uthi, ‘Andisenakuphinda ndikwazi ukukunyamekela’ kunzima gqitha.”

Isigqibo sokuthumela umguli kwindawo anokunyanyekelwa kuyo seso umKristu afanele asihlolisise ngenyameko nangomthandazo. IBhayibhile iyalela amaKristu ukuba ‘alungiselele abo bangabawo,’ yaye oku kuquka ukulungiselela abazali okanye abantwana abagulayo. (1 Timoti 5:8) Umntu akafanele ayityeshele le mbopheleleko ingokweZibhalo ukuze nje izinto zimhambele kakuhle. Kwelinye icala, kusenokubakho izinto—eziquka ukhuseleko lomguli—ezinokwenza kufaneleke kakhulu yaye kube sisenzo sothando ukumnika inyameko esemgangathweni. Esi sisigqibo sentsapho yaye sifanele sihlonelwe ngabanye.—Roma 14:4.

Ithemba Eliqinisekileyo

IBhayibhile ibakhuthaza gqitha abo bathwaxwa yiHD nezinye izifo ezinganyangekiyo. IZibhalo zinikela ithemba eliqinisekisiweyo lehlabathi elitsha elinobulungisa apho ‘kungekho mmi wakhona oya kuthi: “Ndiyagula.”’ Ukongezelela, iBhayibhile ixela kusengaphambili ukuba “isiqhwala siya kutsiba njengexhama, nolwimi lwesimumu luya kumemelela ngochulumanco.”—Isaya 33:24; 35:6.

UBobby, ocatshulwe ngaphambilana, uyathuthuzelwa leli themba. Uthi: “Olu lunyango kanye endilufunayo. Luhlobo lwekamva oluya kuyenza yonke le nto njengenxalenye yezinto ezadlula kudala.”

[Imibhalo esemazantsi]

[Ibhokisi ekwiphepha 13]

Ukufuza IHD—Amathuba Amaninzi Okuba Ibe Kwimizila Yemfuza

Mntwana ngamnye onomzali oneHD unamathuba angama-50 ekhulwini okusifuza esi sifo. Ngoba?

Uneendidi ezingama-23 zemisontwana ekwiseli nganye esemzimbeni wakho. Lungu ngalinye lale misontwana lavela kutata wakho; elinye lavela kumama wakho. Masithi ke, utata wakho uneHD. Ekubeni eya kudlulisela umsonto omnye kwimisonto yakhe emibini yaye ekubeni usiba mnye kuphela owonakalayo kule mibini, maninzi amathuba okuba ungafuza iHD.

Ekubeni iimpawu zeHD ngokuqhelekileyo zingabonakali de umntu abe phakathi kweminyaka engama-30 nengama-50 ubudala, maxa wambi umntu oneHD udla ngokuba sele enabantwana xa efunyaniswa enesi sifo.

[Ibhokisi ekwiphepha 14]

Achazelwe Kusini Na Okanye Angachazelwa

Xa efunyaniswe eneHD, umguli ufanele achazelwe kuphelelwe phi? Amanye amalungu entsapho adla ngokoyikela ukuba umguli akasayi kukwazi ukuhlangabezana nokwazi ukuba unesifo esinganyangekiyo nesiza kumnqenqetha. Noko ke, asibobulumko ukuqikelela ukuba akasayi kuthanda ukuchazelwa. Enye incwadana ephathelele iHD ilumkisa ngelithi: “Ukoyika kwethu nokunxunguphala kunokwenza sifune ukubakhusela ngokugqithiseleyo.” Yongezelela ngelithi: “[Umguli] usenokuva kuthe qabu xa ekugqibeleni echazelwa ngawo wonke undonakele.” Ukongezelela, ekubeni esi sifo sikwimfuza, kubalulekile ukuba abo baneHD bayibone ingozi yokudlulisela esi sifo kubo nabaphi abantwana abanokuba nabo kwikamva.

[Umfanekiso okwiphepha 13]

UJanice, owaphulukana nabantwana abane ngenxa yesifo sikaHuntington