{"id":11631,"date":"2022-06-23T19:00:58","date_gmt":"2022-06-23T23:00:58","guid":{"rendered":"https:\/\/fireflyin.org\/?p=11631"},"modified":"2025-02-25T12:05:15","modified_gmt":"2025-02-25T17:05:15","slug":"kris-corner-navigating-unknown-family-medical-history","status":"publish","type":"post","link":"https:\/\/fireflyin.org\/rw\/resources\/news-library\/kris-corner-navigating-unknown-family-medical-history\/","title":{"rendered":"Kris 'Inguni - Kuyobora Amateka Yubuvuzi Yumuryango"},"content":{"rendered":"

Uyu munsi ndashaka gusangira bike mubyo nize vuba aha bijyanye no gufasha abana kugendana amateka atazwi, cyangwa azwi cyane,\u2026. kuberako bakwiriye kubona amakuru ayo ari yo yose bashoboye, kandi nuburyo biteye ubwoba kandi bitesha umutwe bigomba kuba kuri bo Kutabona amakuru nkaya.<\/span>\u00a0<\/span><\/p>\n

Mugihe mperutse kwitabira inama, ntabwo numvise rimwe gusa, ahubwo numvise amasomo abiri yazanye iki kibazo mubitekerezo byanjye\u2026 kandi ndashobora kuvugisha ukuri, sinari narigeze mbitekereza cyane kugeza icyo gihe. Noneho, ntabwo bivuze ko ntari narigeze mbitekerezaho na gato, ariko birashoboka ko atari nkanjye.\u00a0<\/span>\u00a0<\/span><\/p>\n

O.<\/span>isomo <\/span>yakoraga cyane cyane mugupima genetike, byombi kugirango tubone ibisubizo byamateka yubuvuzi butazwi cyangwa bugarukira ariko no gushakisha ababyeyi \/ umuryango wavutse (iyi ni iyindi ngingo mugihe kindi). Irindi somo nitabiriye ryaganiriye ku gufasha abana kugenwa kwa muganga mugihe bafite "landmine \/ trigger" yo kugira amateka yubuvuzi bwumuryango butazwi cyangwa buke. <\/span>\u00a0<\/span><\/p>\n

Noneho, ushobora kwibaza impamvu mvuga ibi hamwe nabana barera, ariko hariho inzira nyinshi zituma umwana urera ashobora kutamenya amateka yubuvuzi bwumuryango we. Ntabwo arikintu byanze bikunze kiza mubiganiro, cyane cyane nabato. Kandi birashoboka, niba umuryango wimutse cyane cyangwa umwana akaba atagiye kwa muganga kenshi, ibibazo nkibi bishobora kuba bitarigeze bibazwa kandi \/ cyangwa umuryango ntiwigeze ubona umwanya wo kubyandikira umwana. Cyangwa birashoboka ko umuganga umwe yakusanyije amakuru ariko inyandiko ntizigeze zijyana kwa muganga ukurikira. Kandi birashoboka rwose ko ababyeyi bavutse batazi amakuru ubwabo.<\/span>\u00a0<\/span><\/p>\n

Rero, ingingo mu nyandiko yanjye uyumunsi niyi: Shakisha umuganga wabana ushobora kuba byibuze bimwe<\/span> ihahamuka <\/span>bamenyeshejwe kandi bumva mubibazo bashobora kwibaza kumateka yumuryango. Noneho, biragaragara niba umwana muganira ari uruhinja, ntabwo ari ngombwa. Ariko nabana bato barumva, nubwo tutatekereza ko aribyo. Noneho, niba uwabitanze atazi ko umwana arerwa, (cyangwa yarezwe) urashobora gusobanuka neza mugitangira gahunda yambere yo kugerageza amazi hamwe nabo kugirango basuzume uko bitwaye; nibyo, ugomba gushobora kumenya uburyo bazumva <\/span>ibibazo.\u00a0<\/span>\u00a0<\/span><\/p>\n

Kandi kugira ngo byumvikane neza, simvuze gusa ko bagomba kumva gusa mubibazo, ariko no mubisubizo byabo. Kurugero, niba umwana arwaye migraine hanyuma muganga arabaza ati: "Ufite igihe kingana iki, kandi amateka yumuryango wabo ni ayahe?" Urashobora gusubiza igihe umwana amaze afite migraine. Hanyuma ku mateka yumuryango, urashobora kuvuga, \u201cNtabwo tubizi.\u201d cyangwa \u201cNtabwo dushidikanya.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Niba uwabitanze avuga gusa, "OK" hanyuma akerekeza kukibazo gikurikira, ntibashobora kuba bameze neza cyangwa bumva (soma: impuhwe) nkuko umwana ashobora gukenera. Niba basubije hamwe, \u201cYego ni byiza. Ibyo bigomba kuba bigoye rwose kutamenya amwe mumateka yumuryango wawe. Ibyo bigutera ute? \u201d Urashobora kubwira ko bumva ko bakeneye "gusoma icyumba" muburyo butandukanye. Ukurikije imyaka umwana afite, igisubizo kirashobora gutandukana. Kandi umwana muto birashoboka ko atari kumenya uko bimutera. Kandi birashoboka ko umwana mukuru ashobora kumva akangutse kurwego runaka.\u00a0<\/span>\u00a0<\/span><\/p>\n

Ariko icyo nshaka kuvuga nuko umuganga ahujwe nibyo umwana ashobora kuba yumva kandi akemera ko; bityo rero mubucuti bukomeje nuwo muganga, umwana ashobora kumva amerewe neza kuko mubyukuri yumva abonye kandi yumvise\u2026 kandi birashoboka cyane ko ashobora gusangira ibibazo cyangwa kubaza ibibazo mugihe kizaza.\u00a0<\/span>\u00a0<\/span><\/p>\n

Namenye ko kwipimisha genetike kumwana urera ari amacenga nta mateka yumuryango kuko akenshi ibizamini bya geneti bisobanurwa binyuze mumateka yubuvuzi bwumuryango. Ibyo bivuze ko ugomba kumenya ibyabaye mubisekuru mbere kugirango ubashe kuvuga ibizaba kumuntu runaka. Noneho, bitabaye ibyo, biragaragara ko bigoye\u2026 gutinyuka kuvuga ko bidashoboka.<\/span>\u00a0<\/span><\/p>\n

Biragaragara, ibintu bimwe bishobora kugeragezwa utazi amateka\u2026 urugero, ikimenyetso cyindwara ya Huntington. Urashobora kugerageza, ukamenya niba marikeri ihari cyangwa niba idahari. Niba aribyo, umuntu ku giti cye azageraho arwara indwara. Niba bidahari, ntabwo azabiteza imbere. Urubanza rwarangiye.<\/span>\u00a0<\/span><\/p>\n

Kubwamahirwe, hariho indwara nyinshi cyane "zisomwa" zishingiye kumateka yumuryango, niyo mpamvu kubona amakuru menshi ashoboka ari ngombwa, niba bishoboka.<\/span>\u00a0<\/span><\/p>\n

Inyongera yikuramo, byibura kuri njye, uhereye kumasomo yo gupima genetike ni uko mbere yuko umwana yemererwa kwitabwaho, ikizamini cya geneti gishobora gusobanura ko bigoye kubahuza numuryango uhoraho.\u00a0<\/span>\u00a0<\/span><\/p>\n

Noneho, dore icyo nshaka kuvuga: niba ari umwana urerwa yabaye umudendezo mu buryo bwemewe n'amategeko ariko akaba adafite umuryango wamurera utondekanye, igitekerezo rusange, byibuze nkurikije umuvugizi numvise, ni uko kwipimisha genetike bishobora kubikora cyane bigoye, niba bidashoboka rwose, guhuza umwana kubera isuzuma ryakiriwe hakoreshejwe ibizamini bya geneti.\u00a0<\/span>\u00a0<\/span><\/p>\n

Ariko ndashaka kongeramo amafaranga abiri, uhereye kumuntu wanjye <\/span>icyerekezo<\/span>. Nashyigikira gukora ikizamini mbere yo kurerwa kuko abana barerwa, igihe kinini, bafite Medicaid kandi bizatanga ikiguzi. Nta cyemeza ko umuryango urera uzahabwa Medicaid mu rwego rwo gushyikirana kandi kwipimisha ni ibihumbi n'ibihumbi by'amadolari. Igihe nabwiraga umuganga wabana witerambere witerambere ko gahunda yumuhungu wacu yahindutse muguhagarika uburenganzira bwababyeyi kandi ko tugiye kumurera, igisubizo cye cya mbere kwari ukumupimisha ibintu bimwe na bimwe kugirango byibuze tumenye icyo dushobora kuba duhura nacyo munsi ya umuhanda.\u00a0<\/span>\u00a0<\/span><\/p>\n

Ikigaragara ni uko nta gushidikanya yari afite mu bitekerezo bye ko tugiye gukurikiza hamwe no kurerwa, tutitaye kubyo ikizamini cyatubwiye, bityo rero muri uru rwego byatugiriye akamaro mu nzego nyinshi. Kurera umwana bikimara kurangira, twashoboye gutangira inzira yo kumushakira Medicaid Waiver (nikintu nteganya kubiganiraho mu nyandiko iri imbere). Ikigaragara ni uko ku giti cyanjye ndashimira ubuvugizi bwe bwo kumupimisha vuba vuba kugira ngo tubone serivisi mu mwanya we vuba.\u00a0<\/span>\u00a0<\/span><\/p>\n

Ingingo hano ni uko, bitewe nurubanza, hashobora kuvugwa ko ari byiza cyangwa byangiza, bitewe n'umwana n'aho ageze muburyo bwo kurera.<\/span>\u00a0<\/span><\/p>\n

Ndashishikariza kurera <\/span>no kurera<\/span> ababyeyi bafite umubyeyi umwe cyangwa bombi babyaranye, basogokuru, barumuna, ba nyirasenge cyangwa nyirarume\u2026 umuntu uwo ari we wese mu muryango w\u2019ibinyabuzima by\u2019umwana, kugira ngo akoreshe ayo mikoro maze abaze, abaze, abaze amakuru y\u2019amateka y\u2019ubuvuzi mu muryango!<\/span>\u00a0<\/span><\/p>\n

Nzi ko bishobora kugorana kandi nkumva bidasanzwe cyangwa bigutera, ariko gerageza kwibuka ko ubikorera umwana\u2026 atari kubwubumenyi bwawe bwite. Nukubafasha kugirango bagire amakuru atera imbere. Ibintu by'ibanze ugomba kwibaza harimo indwara z'umutima, indwara y'ibihaha, kanseri, ubusinzi, ibiyobyabwenge, asima, ibisebe, kutumva, kubura amaso, igicuri, migraine\u2026 urutonde rukomeza\u2026 kandi, niba wumva rwose ushize amanga, baza iki ruhande rwumuryango ni kuri, kandi ninde ubifite. Kandi niyo wabura ikintu (kuko birashoboka cyane ko uzabikora!), Nibyo rwose. Umwana azamenya ko wakoze ibishoboka byose kugirango ukusanye amakuru kumuhagarariye.<\/span>\u00a0<\/span><\/p>\n

Kandi igice cyanyuma cyibi nukwandika no kukibika ahantu hizewe kuburyo mugihe wowe, cyangwa umwana, ubikeneye, uzagira byibuze ikintu cyo kunyuramo.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

Nzi ko ibi bishobora kuba bigoye, kandi akenshi bigoye, kugendana numwana wawe. Ariko nibyiza ko umwana afite umuntu ushobora kubatoza munzira no kubafasha <\/span>kutumva <\/span>ntibari bonyine mu rugendo rwabo.<\/span>\u00a0<\/span><\/p>\n

Mubyukuri,<\/span>\u00a0<\/span><\/p>\n

Kris<\/span>\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"

Today I\u2019d like to share a little bit of what I learned recently about helping children navigate unknown, or little known, medical history\u2026. because they deserve to have access to any information they possibly can, and also how scary and frustrating it must be for them to NOT have access to such information.\u00a0 While recently […]<\/p>\n","protected":false},"author":19,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[10],"tags":[],"class_list":["post-11631","post","type-post","status-publish","format-standard","hentry","category-kriss-corner"],"yoast_head":"\nKris' Corner - Navigating Unknown Family Medical History - Firefly Children and Family Alliance<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/fireflyin.org\/rw\/resources\/news-library\/kris-corner-navigating-unknown-family-medical-history\/\" \/>\n<meta property=\"og:locale\" content=\"rw_RW\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kris' Corner - 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