Bolwetse Jwa Huntington—Go Tlhaloganya Matlhotlhapelo A a Mo Dijineng
Bolwetse Jwa Huntington—Go Tlhaloganya Matlhotlhapelo A a Mo Dijineng
“Fa nna le Johnny re ne re nyalana, ruri ke ne ke akanya gore re tlile go nna re itumetse go ya go ile morago ga moo. Mme ka iketlo botho jwa monna yono yo o lorato, yo o amegang bo ne jwa simolola go fetoga fela thata. O ne a ba a simolola go nna a phatloga fela ka bogale, a sa laolege. Fa nako e ntse e ile, Johnny o ne a tshwanelwa ke gore a nne kwa bookelong jwa malwetse a tlhaloganyo, koo a neng a feleletsa a tlhokafetse gone. Dingwagangwaga morago ga moo re ne ra utlwa gore bolwetse jwa gagwe jo re neng re sa bo itse bo ne bo na le leina—bolwetse jwa Huntington.”—Janice.
BATHO ba le diketekete mo lefatsheng lotlhe ba tshwerwe ke bolwetse jono jwa Huntington (Huntington’s disease [HD]), e leng bolwetse jo bo mo dijining jwa ditshika tse dikgolo tsa boboko. Ka ntlha ya gore HD ke bolwetse jo motho a bo gotsang mo batsading, gantsi bo tshwara batho ba feta a le mongwe mo lelapeng. Janice o bolela jaana: “Fa e sa le ka loso lwa ga Johnny, ke swetswe ke bana ba le bararo ba basimane le mosetsana a le mongwe, ba bolawa ke bolwetse jono jwa Huntington, mme ditlogolwana tsa me di le tharo le tsone di na le jone. O fitlhele e kete go lelela loso lwa yo mongwe mo lelapeng ga go a lekana fa go tla nako ya go lelela lwa yo mongwe gape.”
Go a utlwala he go bo bolwetse jwa HD bo ile jwa tlhalosiwa e le “selo se se tlhobaetsang tota,” e seng fela mo mothong yo bo mo tshwereng mme gape le mo go ba ba tshwanelwang ke go mo tlhokomela. Totatota bolwetse jwa HD ke eng? Batho ba bo ba tshwereng—le ba ba ba tlhokomelang—ba ka thusiwa jang?
Matshwao a Jone
Bolwetse jono jwa Huntington, jo bo teeletsweng ka Dr. George Huntington, yo o neng a tlhalosa matshwao a jone la ntlha ka 1872, bo bonala ka go fetoga ga botho jwa motho le boitshwaro jwa gagwe ka tsela e e sa iponatsheng mme diphetogo tseno di nna di bonala sentle fa bolwetse jono bo ntse bo etegela pele. Di ka simolola ka go fetofetoga ga maikutlo le go serwa ke sengwe le sengwe fela go ya go fitlha go go tshwenyega thata mo maikutlong le go galefa ka tsela e e feteletseng. Batho ba bo ba tshwereng ba ka nna ba ritlaritla e bile matsogo le maoto a bone ga a kgone go nna fela a sa tshikinyege. Mmele ga o kgone go dirisana sentle, mme fa nako e ntse e ile motho yo o nang le bolwetse jono o nna marorongwane. Ga o utlwe gore a reng fa a bua. O metsa ka bothata, mme ga a tlhole a kgona go gakologelwa dilo e bile ga a kgone go tlhoma mogopolo sentle. Go ithuta, go rulaganya dilo, le go rarabolola mathata—dilo tse pele a neng a kgona go di dira kwantle ga mathata—jaanong e nna bothata, kgotsa e bile ga a kgone go di dira gotlhelele. *
Matshwao a bolwetse jono jwa HD ga a fele e bile a nna a gakala botshelo jotlhe jwa motho. * A rata kana a sa rate o tlile go tshwanelwa ke go tlogela tiro ya gagwe mme ga a kitla a tlhola a kgona go itlhokomela. Gantsi seno se utlwisa motho yo o nang le bolwetse jwa HD botlhoko thata. Monna mongwe yo bo mo tshwereng yo o bidiwang Bill o bolela jaana: “Ke ne ke tle ke age matlo. Gone jaanong ga ke dire sepe fela. Ke utlwa ke kgobegile marapo fela thata.”
Ee, go ka utlwisa motho yo o tshwerweng ke bolwetse jwa HD botlhoko fela thata fa a bona gore o ntse a koafala ka iketlo mo mmeleng le mo mogopolong. Gape go ka utlwisa le moratiwa wa gagwe botlhoko go mmona jaaka fa a ntse a ineela mo bolwetseng jono jo bo ngomolang pelo. Ka jalo he, go ka dirwang go thusa motho yo o nang le bolwetse jwa HD?
Go Thusa Molwetse
Le fa gone go se na tsela ya go alafa bolwetse jwa HD, tlhokomelo e e tshwanetseng ya kalafi e thusitse ba le bantsi go itshokela matshwao a jone. Dr. Kathleen Shannon o bolela jaana: “Kalafi ya jone ga e ame tshenyo e e nnelang ruri e bolwetse jono bo e bakang, mme gone e tokafatsa boleng jwa botshelo jwa balwetse fela thata.”
Ka sekai, bangwe ba ba nang le HD ba ile ba solegelwa molemo ke kalafi e e laolang go ritlaritla ga molwetse le e e fokotsang go tshwenyega thata mo maikutlong. Thuso ya ngaka e e dirang ka dikotla le yone e ka thusa. Ka ntlha yang? Ka gonne gantsi batho ba ba tshwerweng ke HD ba nna basesane, mme gantsi ba tlhoka dijo tse di nang le dikilojoule di le dintsi gore ba nne ba bolokile boima jwa mmele wa bone.
Ka go iteka go sekaenyana fela, malapa mangwe a kgonne go thusa ba ba tshwerweng ke bolwetse jono go fetogela mo maemong a bone a masha. Ka sekai, Monica o bolela jaana: “Jaaka fa puo ya ga rre e ne e ntse e koafalela pele, re ne ra batla ditsela tsa go lemoga se a neng a se kopa mo go rona.” Monica le ba lelapa la gaabo ba ne ba dira bukanyana e nnye ya ditsebe tse di tshwaragantsweng e e dirilweng ka ditsebe tsa khatebokoso, mme nngwe le nngwe ya tsone e na le lefoko le le lengwe kana setshwantsho. “Re ne ra akaretsa rre mo tirong eno,” go rialo Monica. “O ne a re thusa go tlhopha ditshwantsho le mafoko.” Rraagwe Monica o ne a kgona go buisana sentle le batho a dirisa sedirisiwa seno se sesha, ka go supa se a neng a sa kgone go ntsha lefoko go se bua.
Tota le fa molwetse a ntse fela mo ntlong ya gagwe kana a le kwa lefelong le go tlhokomelwang balwetse kwa go lone, go botlhokwa gore a nne a golagana le ba lelapa le ditsala. Janice o dumela jaana: “Go ka nna ga bo go le thata go etela batho ba bolwetse jono jwa HD bo etegetseng thata mo go
bone, mme bana ba me ba ne ba itumela thata fa ditsala di ba etela go tla go ba kgothatsa.” Maswabi ke gore karolo eno ya go ba tshegetsa ka dinako tse dingwe e a itlhokomolosiwa. “Ka dinako tse dingwe re ikutlwa re kgaphetswe kwa thoko,” go rialo Beatrice, yo monna wa gagwe a tshwerweng ke bolwetse jono jwa HD. “Fa ditsala tsa rona di ne di ka nna di tsena fela go tla go dumedisa monna wa me, o ne a tla itumelela seo fela thata.”Le fa go ntse jalo, batho ba ba tshwerweng ke HD ba tlhokang thata? “Go tlhaloganngwa,” go rialo Bobby, yo o tshwerweng ke bolwetse jono e bile e le mongwe wa Basupi ba ga Jehofa. O oketsa jaana: “Bakaulengwe le bokgaitsadi ba Bakeresete mo phuthegong ba a lemoga gore go ka nna ga ntlhoka nakonyana gore ke kgone go kokoanya dintlha tsa me gore ke akgele mo dipokanong. E bile ga ba kgopisege fa ke galefa kana ke gakatsega, ka gonne ke letshwao fela la bolwetse jono.”
Go Ema Batlhokomedi Nokeng
Gone ke boammaaruri gore batlhokomedi le bone ba tlhoka go engwa nokeng, ka gonne ba nna ba ntse ba tlhobaela ka dinako tsotlhe. Janice o bolela jaana: “Ka metlha o nna o tlhobaela ka pabalesego ya molwetse. Fa bolwetse jwa gagwe bo ntse bo etegela, o utlwa o se na se o ka se dirang.”
Go bonala sentle gore batlhokomedi ba tlhoka go kgothadiwa. Beatrice o tlhalosa tsela e nngwe e ba ka kgothadiwang ka yone. O bolela jaana: “Ga nka ke ka tlogela monna wa me a le esi, mme nako le nako fa ke lalediwa go tla kokoanong nngwe, ke tshwanelwa ke go raya motho ke re, ‘Ke leboga go bo o nkopile, mme nka se kgone go tla.’ Go ne go tla nna monate jang fa tsala e ne e ka re, ‘Gongwe morwaake kana monna wa me a ka nnanyana le monna wa gago.’!” Ee ruri, batlhokomedi ba itumelela go akanyediwa ka tsela e e bontshang go ba utlwela botlhoko jalo!—1 Petere 3:8.
Jaaka fa bolwetse jwa HD bo ntse bo fitlha kwa dikgatong tsa jone tsa bofelo, motlhokomedi a ka nna a tshwanelwa ke go dira tshwetso e gongwe e ka nnang tshwetso e e botlhoko go di gaisa tsotlhe. “Go tshwanelwa ke gore o re, ‘Ga ke tlhole ke kgona go go tlhokomela jaanong’ go boima fela thata,” go rialo Janice.
Tshwetso ya go isa molwetse kwa lefelong le go tlhokomelwang balwetse mo go lone ke e Mokeresete a tshwanetseng go e akanyetsa ka kelotlhoko le ka thapelo. Baebele e laela Bakeresete gore ba ‘tlamele ba e leng ba bone,’ mme seno se akaretsa go tlamela batsadi kana bana ba gago ba ba lwalang. (1 Timotheo 5:8) Motho ga a tshwanela go tlogela boikarabelo jono jwa Dikwalo fela ka gonne a batla go gololesega. Ka fa letlhakoreng le lengwe, go ka nna ga bo go na le mabaka a mangwe—a a akaretsang go amega ka pabalesego ya molwetse—a a ka dirang gore go lesa molwetse a tlhokomelwa ke batho ba ba ithutetseng tiro eno e nne yone tsela e e lorato thata le e e molemo thata. Eno ke tshwetso e e dirwang ke lelapa ka bolone mme ba bangwe ba tshwanetse go e tlotla.—Baroma 14:4.
Tsholofelo ya Mmatota
Baebele e gomotsa thata mo bathong ba ba tshwerweng ke bolwetse jwa HD le ke malwetse a mangwe a a sa alafegeng. Dikwalo di re naya tsholofelo e e tlhomameng ya lefatshe le lesha la tshiamo le mo go lone ‘monni wa gona a se kitlang a re: “Ke a bobola.”’ Mo godimo ga moo, Baebele e bolelela pele gore ‘setlhotsa se tlaa tlola jaaka kwalata, le loleme lwa semumu lo tlaa opela.’—Isaia 33:24; 35:6.
Bobby, yo o nopotsweng fa godimonyana, o gomodiwa ke tsholofelo eno. O bolela jaana: “Eno ke kalafi e ke e batlang. Ke mofuta wa isagwe e e tlileng go dira gore gotlhe gono go bonale e le dilo tsa bogologolo tala.”
[Dintlha tse di kwa tlase]
^ ser. 6 Matshwao a HD le lobelo lo bolwetse jono bo etegelang pele ka lone mo mothong ga di tshwane gotlhelele mo bathong ba ba farologaneng. Ka gone, matshwao a a tlhalosiwang fano ke a a akaretsang fela mme ga a beelwa gore go dirisiwe one fela go bona gore a motho o ka tswa a na le bolwetse jono.
^ ser. 7 Motho yo o nang le bolwetse jwa HD a ka tshela dingwaga di le 15 go ya go di le 20 morago ga gore matshwao ano a simolole, le mororo ba bangwe ba tshela lobaka lo loleelenyana go feta moo. Gantsi batho ba teng ba bolawa ke nyumonia, ka gonne motho yo o tshwerweng ke bolwetse jono ga a kgone go gotlhola sentle gore a ntshe go tshwaetsega go go mo sehubeng.
[Lebokoso mo go tsebe 13]
Go Gotsa Bolwetse Jwa HD mo Batsading—O ka Nna wa bo Gotsa, O ka Nna wa Se ka Wa bo Gotsa
Ngwana mongwe le mongwe yo o nang le motsadi yo o tshwerweng ke HD a ka nna a gotsa bolwetse jono mo go ene. Ka ntlha yang?
O na le dipara di le 23 tsa di-chromosome mo seleng nngwe le nngwe ya mmele wa gago. E le nngwe mo pareng nngwe le nngwe e tswa mo go rraago; e nngwe e tswa mo go mmaago. Ka jalo, a re re rraago o na le bolwetse jwa HD. Ka gonne a tlile go fetisa e le nngwe fela ya di-chromosome tsa gagwe tse pedi e bile ka gonne e le nngwe fela ya tse pedi tseno e senyegile, o ka nna wa gotsa HD eno, kana o ka nna wa se ka wa e gotsa.
Ka gonne matshwao a HD gantsi a sa bonale go fitlha motho a le gareng ga dingwaga di le 30 le di le 50, ka dinako tse dingwe motho yo o tshwerweng ke bolwetse jono jwa HD o a bo a setse a na le bana fa go lemogwa gore o na le jone.
[Lebokoso mo go tsebe 14]
A o Tshwanetse go Bua Kana Nnyaa
Fa go lemogiwa gore motho o na le HD, o tshwanetse go bolelelwa go le kana kang? Bangwe mo lelapeng ba tshaba gore molwetse ga a na go kgona go itshokela go itse gore o na le bolwetse jo bo sa foleng jo bo mo koafatsang. Le fa go ntse jalo, ga go botlhale go ipolelela fela gore ga a ne a batla go itse. “Dilo tse re di tshabang le tse re tlhobaelang ka tsone di ka nna tsa dira gore re batle go mo sireletsa thata,” go tlhagisa jalo bukana nngwe e e buang ka HD, e oketsa jaana: “[Molwetse a ka nna a] ikutlwa a wetse makgwafo thata go itse gore kgabagare go na le lebaka la dilo tseno tsotlhe tse di ntseng di mo diragalela.” Mo godimo ga moo, ka motho a gotsa bolwetse jono mo batsading ba gagwe, go botlhokwa thata gore ba ba nang le bolwetse jwa HD ba itse ka kotsi ya go bo fetisetsa mo baneng bape ba ba ka nnang ba nna le bone mo isagweng.
[Setshwantsho mo go tsebe 13]
Janice, yo o swetsweng ke bana ba le banè ba bolawa ke bolwetse jono jwa Huntington