I-Huntington—Ukuqonda Inhlekelele Yofuzo

“Lapho ngishada noJohnny, ngangicabanga ukuthi siyohlala ngenjabulo njalo njalo. Kodwa kancane kancane bashintsha kakhulu ubuntu bale ndoda enothando nekhathalelayo. Yaqala nokuvele ibhoke ngolaka esikhaleni nje. Ngokuhamba kwesikhathi, uJohnny kwadingeka ayohlala esibhedlela sabagula ngengqondo, lapho ashonela khona. Eminyakeni ethile kamuva sathola ukuthi lesi sifo esasiyimfihlakalo sinegama—i-‘Huntington.’”—UJanice.

IZINKULUNGWANE zabantu emhlabeni jikelele ziphethwe i-Huntington (HD [Huntington’s disease]), ukuphazamiseka kwesimiso sezinzwa okubangelwa ufuzo. Njengoba i-HD iwufuzo, ivame ukuhlasela amalungu omkhaya angaphezu kwelilodwa. UJanice uthi: “Ngemva kokufa kukaJohnny, sengishonelwe amadodana amathathu nendodakazi eyodwa ngenxa ye-Huntington, futhi abathathu babazukulu bami banayo. Kubonakala sengathi ngithi ngisakhalela omunye kube kufa omunye.”

Ngesizathu esizwakalayo, i-HD iye yachazwa ngokuthi “into esabekayo ephilayo,” hhayi kuphela esigulini kodwa nakulabo okumelwe basinakekele.a Iyini ngempela i-HD? Bangasizwa kanjani labo abaphethwe yilesi sifo—kanye nalabo ababanakekelayo?

Izimpawu

Njengoba yaqanjwa ngoDkt. George Huntington, owaqala ukuchaza izimpawu zayo ngo-1872, i-Huntington iphawuleka ngoshintsho olucashile ebuntwini bomuntu nasekuziphatheni kwakhe okubonakala kakhulu lapho lesi sifo siqhubeka. Lokhu kusukela ekushintshashintsheni kwesimo somuntu nokuba nenhliziyo encane kuye ekucindezelekeni nasekubeni nolaka. Kulabo esibaphethe kungase kudikizele umzimba futhi babe nedumbe ezandleni nasezinyaweni. Ukusebenza ngokuvumelana kwamalungu omzimba kuyancipha, futhi isiguli singase senze amaphutha amaningi. Siqala ukunkwankwaza. Kuba nzima ukugwinya, futhi amandla engqondo nawenkumbulo ayaphela. Ukufunda, ukuhlela nokuxazulula izinkinga—okwake kwaba yimisebenzi evamile—manje sekuwumthwalo, uma kungekhona ukuthi asisakwazi nhlobo ukukwenza.b

Izimpawu ze-HD ziyaphikelela futhi ziqine kukho konke ukuphila kwesiguli.c Noma kanjani, kuyodingeka siyeke emsebenzini futhi ngeke sisakwazi ukuzinakekela. Ngokuvamile leli igalelo elinzima kumuntu ophethwe i-HD. UBill, ophethwe yilesi sifo uthi: “Ngangingumakhi, manje angisenzi lutho. Kuyangikhungathekisa ngempela.”

Yebo, kungamkhungathekisa ngempela umuntu one-HD ukubona amandla akhe omzimba nawengqondo ephela kancane kancane. Kubuhlungu ngempela nakothandekayo ukubona isiguli sinqotshwa yilesi sifo esesabekayo. Pho, yini engenziwa ukuze kusekelwe umuntu one-HD?

Ukusekela Isiguli

Nakuba lingekho ikhambi le-HD, usizo lwezempilo olufanele luye lwasiza abaningi ukuba babhekane nezimpawu zayo. UDkt. Kathleen Shannon uthi: “Lokhu akusithinti isimo esiwohlozayo sesikhathi eside salesi sifo kodwa kuyalithuthukisa kakhulu izinga lokuphila leziguli.”

Ngokwesibonelo, abanye abane-HD baye bazuza ngokuthola imithi elawula imiqhabanyeko futhi inciphise ukucindezeleka. Usizo lukachwepheshe wezokudla nalo lungaba yinzuzo. Ngani? Ngoba ngokuvamile labo abaphethwe yi-HD bavame ukuba nenkinga yokwehla kwesisindo, futhi ngokuvamile badinga ukudla okunama-kilojoule amaningi ukuze balondoloze isisindo somzimba wabo.

Ngokuhlakanipha, eminye imikhaya iye yakwazi ukusiza isiguli ukuba sizivumelanise nokulinganiselwa okusha. Ngokwesibonelo, uMonica uthi: “Njengoba isimo sokukhuluma sasiya siba sibi nakakhulu kubaba, safuna izindlela esingathola ngazo ukuthi ufunani.” UMonica nomkhaya wakhe babeka ndawonye amakhasi enziwe ngamakhadibhodi, ngalinye linegama elilodwa noma isithombe. “Sahilela nobaba kulo mkhankaso,” kusho uMonica. “Wasiza ekukhetheni izithombe namagama.” Ngaleli thuluzi elisha, ubaba kaMonica wayexoxa ngokukhomba lokho ayengenakukwazi ukukusho ngomlomo.

Ngisho noma isiguli sihlala ekhaya noma endaweni yokunakekela abagulayo, kubalulekile ukuxhumana namalungu omkhaya nabangane. UJanice uyavuma: “Kungase kube nzima ukuvakashela labo asebebambeke kakhulu ngenxa ye-HD, kodwa izingane zami zazikwazisa kakhulu uma abangane bedlula futhi bazikhuthaze.” Ngokudabukisayo, ngezinye izikhathi asinakwa lesi sici sokusekela. UBeatrice, omyeni wakhe une-HD uthi: “Ngezinye izikhathi sizizwa silahliwe. Uma abangane bebengadlula ukuze nje babingelele umyeni wami, bekungasho okukhulu kakhulu kuye!”

Njengoba sesibone konke lokhu, yini abayidinga kakhulu labo abane-HD? UBobby, ophethwe yilesi sifo, ongomunye woFakazi BakaJehova uthi: “Ukuqonda.” Uyanezela: “Abafowethu nodadewethu abangamaKristu ebandleni bayaqaphela ukuthi kungase kungithathe umzuzu owodwa noma emibili ukuhlanganisa imiqondo futhi ngiphendule emihlanganweni. Futhi abacasuki lapho ngikhungatheka noma ngiqhaqhazela, ngoba kumane nje kuwuphawu lwalesi sifo.”

Ukusekela Abanakekeli

Yiqiniso, abanakekeli nabo badinga ukusekelwa, ngoba babhekana nezikhathi eziningi ezikhathazayo. UJanice uthi: “Uhlale ukhathazeka ngokuphepha kwesiguli. Njengoba isimo saso siya siba sibi, uzizwa ungenalusizo.”

Ngokusobala, abanakekeli badinga isikhuthazo. UBeatrice uchaza enye indlela lokhu okungenziwa ngayo. Uthi: “Ngeke ngimshiye yedwa umyeni wami, futhi njalo lapho ngimenyelwa embuthanweni kufanele ngithi, ‘Ngiyabonga ngokungimema, kodwa ngeke ngikwazi ukuza.’ Yeka ukuthi bekungaba kuhle kanjani uma umngane ubengathi, ‘Mhlawumbe indodana yami esikhulile noma umyeni wami angasala nomyeni wakho okwesikhashana.’!” Ngokuqinisekile, abanakekeli bayakwazisa ukucatshangelwa okunozwela kanjalo!—1 Petru 3:8.

Lapho i-HD ifinyelela amazinga okugcina, umnakekeli kungase kudingeke enze isinqumo mhlawumbe esibuhlungu kunazo zonke. UJanice uthi: “Kunzima ngempela lapho kudingeka ukuba uthi ‘Ngeke ngisakwazi ukukunakekela.’”

UmKristu kuyodingeka asicabangele kahle nangomthandazo isinqumo sokuyisa isiguli endaweni yokunakekela abagulayo. IBhayibheli liyala amaKristu ukuba ‘ondle abakubo siqu,’ futhi lokhu kuhilela nokondla abazali abagulayo noma izingane ezigulayo. (1 Thimothewu 5:8) Umuntu akufanele alahle lo mthwalo wemfanelo ongokomBhalo ukuze nje aphile kalula. Ngakolunye uhlangothi, kungase kube nezici—kuhlanganise nokukhathalela ukuphepha kwesiguli—ezenza ukuba ukunakekelwa ochwepheshe kube yinkambo ebonisa uthando nengcono kakhulu. Lesi isinqumo somkhaya ngokwawo futhi abanye kufanele basihloniphe.—Roma 14:4.

Ithemba Eliqinisekile

IBhayibheli liyaduduza kakhulu kulabo abaphethwe i-HD nezinye izifo ezingelapheki. ImiBhalo inikeza ithemba eliqinisekile lezwe elisha lokulunga lapho ‘abakhe khona bengasayikusho ukuthi “Ngiyagula.”’ Ngaphezu kwalokho, iBhayibheli libikezela ukuthi “unyonga luyakutshekula njengendluzele, nolimi lwesimungulu luyakuhuba.”—Isaya 33:24; 35:6.

UBobby, oke wacashunwa ududuzwa yileli themba. Uthi: “Yileli khambi engilifunayo. Lolu uhlobo lwekusasa oluyokwenza konke lokhu kubonakale njengengxenye yesikhathi eside esidlule.”

[Imibhalo yaphansi]

[Ibhokisi ekhasini 21]

Ukuzuza I-HD Njengefa—Kunamathuba Angamaphesenti Angu-50 Okuba Uyithole Ngofuzo

Ingane ngayinye enomzali one-HD inamathuba angamaphesenti angu-50 okuthola lesi sifo njengefa. Ngani?

Unamabhangqa angu-23 ama-chromosome asengqamuzaneni ngalinye lomzimba wakho. Elinye ilunga laleli bhangqa livela kubaba, elinye livela kumama. Khona-ke, ake sithi ubaba wakho une-HD. Njengoba ezodlulisa eyodwa kuphela kuma-chromosome akhe amabili futhi njengoba kungeyodwa kuphela elimele, amathuba okuthi ungathola i-HD njengefa ayisigamu.

Njengoba izimpawu ze-HD ngokuvamile zingabonakali kuze kube yilapho umuntu eseneminyaka ephakathi kwengu-30 nengu-50 ubudala, ngezinye izikhathi isiguli sisuke sesinezingane ngesikhathi sona ngokwaso sitholakala ukuthi sinalesi sifo.

[Ibhokisi ekhasini 22]

Ukusitshela Noma Ukungasitsheli

Uma umuntu etholakala ukuthi une-HD, kungakanani okufanele atshelwe kona? Amanye amalungu omkhaya esaba ukuthi kuyoba nzima esigulini ukwazi ukuthi sinesifo esingelapheki, esiwohlozayo. Nokho, akukhona ukuhlakanipha ukumane ucabange ukuthi ngeke sithande ukwazi. “Izinto esizesabayo nezisibangela usizi zingase zisenze sizivikele ngokweqile,” kuxwayisa enye incwajana ekhuluma nge-HD, inezela: “[Isiguli] singase sikhululeke ngokuthi sekugcine kwaziwa ukuthi yini ebangela konke lokho okungahambi kahle.” Ngaphezu kwalokho, njengoba lesi sifo sitholakala ngofuzo, kubalulekile ukuba labo abane-HD bazi ukuthi kungenzeka basidlulisele kwezinye zezingane abangase babe nazo.

[Isithombe ekhasini 21]

UJanice, owashonelwa yizingane ezine ngenxa ye-‘Huntington’