{"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\/ht\/resources\/news-library\/kris-corner-navigating-unknown-family-medical-history\/","title":{"rendered":"Kwen Kris la \u2013 Navige Istwa Medikal Fanmi Enkoni"},"content":{"rendered":"

Jodi a mwen ta renmen pataje yon ti kras nan sa mwen te aprann d\u00e8ny\u00e8man sou ede timoun yo navige nan istwa medikal enkoni, oswa ki pa konnen.... paske yo merite gen aks\u00e8 a nenp\u00f2t enf\u00f2masyon yo posib, epi tou ki jan p\u00e8 ak fwistre li dwe pou yo pa gen aks\u00e8 a enf\u00f2masyon sa yo.<\/span>\u00a0<\/span><\/p>\n

Pandan m te f\u00e8k patisipe nan yon konferans, mwen te koute pa s\u00e8lman youn, men de sesyon ki te pote pwobl\u00e8m sa a nan t\u00e8t mwen... e mwen ka di ak tout on\u00e8tete, mwen pa t konsidere l anpil jiska pwen sa a. Koulye a, sa pa vle di mwen pa t 'te panse sou li ditou, men pwobableman pa otan ke mwen ta dwe genyen.\u00a0<\/span>\u00a0<\/span><\/p>\n

O<\/span>ne sesyon <\/span>te f\u00e8 fas espesyalman ak t\u00e8s jenetik, tou de pou ch\u00e8che jwenn repons a istwa medikal fanmi enkoni oswa limite, men tou pou ch\u00e8che paran nesans\/fanmi (ki se yon l\u00f2t sij\u00e8 pou yon l\u00f2t fwa). Yon l\u00f2t sesyon mwen te asiste te diskite sou ede timoun yo navige randevou dokt\u00e8 pandan y ap gen potansy\u00e8l "min t\u00e8\/deklanche" nan gen yon istwa medikal enkoni oswa limite. <\/span>\u00a0<\/span><\/p>\n

Koulye a, ou ta ka mande poukisa mwen ap pale sou sa a ak timoun adoptif, men gen plizy\u00e8 fason poukisa yon timoun nan swen ta ka pa konnen istwa medikal fanmi li. Se pa yon bagay ki neses\u00e8man vini nan konv\u00e8sasyon, sitou ak timoun piti. Epi li ta ka, si fanmi an te deplase anpil oswa timoun nan pa te ale nan dokt\u00e8 a souvan, kalite kesyon sa yo ka pa janm te poze e\/oswa fanmi an pa janm pwofite pou anrejistre li pou timoun nan. Oswa pet\u00e8t yon dokt\u00e8 kolekte enf\u00f2masyon an men dosye yo pa janm te pase ansanm ak pwochen dokt\u00e8 a. Epi li posib tou ke paran ki f\u00e8t yo pa konnen enf\u00f2masyon yo t\u00e8t yo.<\/span>\u00a0<\/span><\/p>\n

Se konsa, pwen nan p\u00f2s mwen jodi a se sa a: Jwenn yon pedyat ki ka omwen yon ti jan<\/span> ch\u00f2k <\/span>enf\u00f2me ak sansib nan kesyon yo ta ka poze sou istwa fanmi yo. Kounye a, kl\u00e8man si timoun w ap diskite a se yon tibebe, li pa enperatif. Men, menm timoun piti ap koute, menm l\u00e8 nou pa panse yo. Kidonk, si founis\u00e8 a pa konnen timoun nan nan swen, (oswa adopte) ou ka tr\u00e8 kl\u00e8 nan k\u00f2mansman premye randevou a pou teste dlo yo av\u00e8k yo pou evalye reyaksyon yo; pa sa, ou ta dwe kapab dis\u00e8ne ki jan sansib yo pral ak <\/span>kesyon.\u00a0<\/span>\u00a0<\/span><\/p>\n

E pou nou kl\u00e8, mwen pa jis di yo ta dwe sansib s\u00e8lman nan kesyon yo, men tou nan repons yo. Pa egzanp, si yon timoun gen migr\u00e8n epi dokt\u00e8 a mande, "Konbyen tan ou genyen yo, e ki istwa fanmi yo?" Ou ka reponn konbyen tan timoun nan te gen migr\u00e8n. Apre sa, sou istwa fanmi an, ou ka di, "Nou pa konnen." oswa "Nou pa s\u00e8ten."\u00a0<\/span>\u00a0<\/span><\/p>\n

Si founis\u00e8 a tou senpleman di, "OK" epi li ale nan pwochen kesyon an, yo ta ka pa tankou nan melodi oswa sansib (li: konpasyon) jan yon timoun ta ka bezwen. Si yo reponn ak, "Oh OK. Sa dwe vr\u00e8man difisil pou pa konnen k\u00e8k nan istwa fanmi ou. Ki jan sa f\u00e8 w santi w?\u201d Ou ka di ke yo ap konprann ke yo bezwen "li chanm nan" yon ti kras diferan. Tou depan de laj timoun nan, repons lan ka evidamman varye. Ak j\u00e8n timoun nan pwobableman pa ta konnen ki jan li f\u00e8 l 'santi. Epi p\u00e8t\u00e8t yon timoun ki pi gran ta ka santi deklanche nan yon s\u00e8ten degre.\u00a0<\/span>\u00a0<\/span><\/p>\n

Men, pwen mwen an se ke dokt\u00e8 a adapte ak sa timoun nan ta ka santi epi li rekon\u00e8t sa; donk nan yon relasyon k ap kontinye ak dokt\u00e8 sa a, timoun nan ta ka santi l pi al\u00e8z paske li akty\u00e8lman santi l w\u00e8 ak tande... e li ka gen plis chans pou l pataje enkyetid oswa poze kesyon alavni.\u00a0<\/span>\u00a0<\/span><\/p>\n

Mwen te aprann ke t\u00e8s jenetik pou yon timoun nan swen adoptif se difisil san yon istwa familyal paske pif\u00f2 nan tan t\u00e8s jenetik yo ent\u00e8prete nan lantiy la nan istwa medikal fanmi an. Sa vle di ou dwe konnen sa ki te pase nan jenerasyon anvan yo nan l\u00f2d yo di sa ki ka rive yon moun espesifik. Se konsa, san sa, li nan evidamman difisil ... oze mwen di enposib.<\/span>\u00a0<\/span><\/p>\n

Kl\u00e8man, gen k\u00e8k bagay yo ka teste pou san yo pa konnen istwa a ... pa egzanp, mak\u00e8 a pou Maladi Huntington la. Ou ka teste, epi konnen si mak\u00e8 a la oswa si li pa. Si li se, moun nan pral nan k\u00e8k pwen devlope maladi a. Si li pa la, L\u00e8 sa a, li pa pral devlope li. Ka f\u00e8men.<\/span>\u00a0<\/span><\/p>\n

Malerezman, gen anpil plis maladi ki "li" ki baze sou istwa familyal, se pout\u00e8t sa li enp\u00f2tan pou jwenn otan enf\u00f2masyon ou kapab, si sa posib.<\/span>\u00a0<\/span><\/p>\n

Yon l\u00f2t retire, omwen pou mwen, nan sesyon an sou t\u00e8s jenetik la se ke anvan yo adopte yon timoun nan swen, yon t\u00e8s jenetik ka potansy\u00e8lman vle di li pi difisil matche ak yo ak yon fanmi pou tout tan.\u00a0<\/span>\u00a0<\/span><\/p>\n

Se konsa, men sa mwen vle di: si se yon timoun ki nan swen ki vin legalman gratis men li pa gen yon fanmi adoptif ki aliye, teyori jeneral la, omwen dapre orat\u00e8 mwen tande a, se ke t\u00e8s jenetik ta ka p\u00e8t\u00e8t f\u00e8 li ekstr\u00e8mman. difisil, si se pa n\u00f2malman enposib, matche ak yon timoun ak\u00f2z yon dyagnostik resevwa atrav\u00e8 t\u00e8s jenetik.\u00a0<\/span>\u00a0<\/span><\/p>\n

Men, mwen vle ajoute de santim mwen an, ki soti nan p\u00e8son\u00e8l mwen <\/span>p\u00e8spektiv<\/span>. Mwen ta defann f\u00e8 t\u00e8s la anvan adopsyon paske timoun ki pran swen yo, pi f\u00f2 nan tan, gen Medicaid epi li pral kouvri pri a. Pa gen okenn garanti ke fanmi adoptif la pral resevwa Medicaid k\u00f2m yon pati nan pake negosyasyon adopsyon an epi t\u00e8s la se d\u00e8 milye ak d\u00e8 milye de dola. L\u00e8 mwen te di pedyat devlopman nou an ke plan pitit gason nou an te chanje pou mete fen nan dwa paran yo e ke nou ta pral adopte l, premye repons li se te f\u00e8 l teste pou k\u00e8k bagay pou nou ta omwen konnen kisa nou ta ka f\u00e8 fas a. wout.\u00a0<\/span>\u00a0<\/span><\/p>\n

Li evidan, li pa t gen okenn dout nan t\u00e8t li ke nou te pral swiv ak adopsyon an, k\u00e8lkeswa sa t\u00e8s la te di nou, kidonk nan egzanp sa a li te benefisye pou nou sou plizy\u00e8 nivo. Le pli vit ke adopsyon an te finalize, nou te kapab k\u00f2manse pwosesis la pou jwenn yon dispans Medicaid pou li (ki se yon bagay mwen planifye pou diskite nan yon p\u00f2s k ap vini an). Kl\u00e8man, mwen p\u00e8son\u00e8lman rekonesan pou defans li pou f\u00e8 l teste pi bon\u00e8 olye ke pita pou nou ka jwenn s\u00e8vis an plas pou li pi vit.\u00a0<\/span>\u00a0<\/span><\/p>\n

Pwen isit la se ke, tou depann de ka a, li ta ka defann benefisye oswa danjere, tou depann de timoun nan ak pwen nan ki li se nan pwosesis adopsyon an.<\/span>\u00a0<\/span><\/p>\n

Mwen ankouraje Foster <\/span>ak adoptif<\/span> paran ki gen aks\u00e8 a youn oswa toude paran byolojik, granparan, fr\u00e8 ak s\u00e8, matant oswa tonton... nenp\u00f2t moun ki nan fanmi byolojik timoun nan, pou pwofite resous sa yo epi mande, mande, mande enf\u00f2masyon sou istwa medikal fanmi an!<\/span>\u00a0<\/span><\/p>\n

Mwen konnen li ka difisil epi mwen ka santi yon ti kras etranj oswa anvayisan, men eseye sonje ke w ap f\u00e8 li POU timoun nan ... pa pou pw\u00f2p konesans p\u00e8son\u00e8l ou. Li se ede yo pou yo gen enf\u00f2masyon an vanse. Bagay debaz pou mande yo enkli maladi k\u00e8, maladi nan poumon, kans\u00e8, alk\u00f2l, dejwe dw\u00f2g, opresyon, maladi ils\u00e8, p\u00e8t tande, p\u00e8t vizyon, epilepsi, migr\u00e8n... lis la kontinye... epi, si w vr\u00e8man santi w fonse, mande kiy\u00e8s. b\u00f2 fanmi an se li sou, ak ki espesyalman genyen li. E menm si ou rate yon bagay (paske gen plis chans ou pral!), sa vr\u00e8man ok. Timoun nan pral konnen ou te f\u00e8 pi bon ef\u00f2 ou te kapab pou kolekte enf\u00f2masyon an pou li.<\/span>\u00a0<\/span><\/p>\n

Ak d\u00e8nye moso sa a se anrejistre li epi estoke li nan yon kote ki an sekirite pou l\u00e8 ou, oswa timoun nan, bezwen li, ou \/ li pral gen omwen yon bagay pou ale.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

Mwen konnen sa a kapab yon z\u00f2n difisil, e souvan konpl\u00e8ks, pou navige ak pitit ou a. Men, li pi bon ke timoun nan gen yon moun ki ka antrene yo sou wout la epi ede yo <\/span>konprann <\/span>yo pa poukont yo nan vwayaj yo.<\/span>\u00a0<\/span><\/p>\n

Sens\u00e8man,<\/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\/ht\/resources\/news-library\/kris-corner-navigating-unknown-family-medical-history\/\" \/>\n<meta property=\"og:locale\" content=\"ht_HT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kris' Corner - 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