Hari igihe twabonye abantu bagufi cyane kurusha abantu basanzwe, ni ukuvuga bagufi, sibyo? Wenda muri filime, cyangwa no mu buzima busanzwe. Impamvu imwe ishobora kuba indwara yitwa Chondrodysplasia. Ntugatinye iyo wumvise iri zina. Mu by'ukuri iri ni izina rusange ry'indwara nyinshi zijyanye n'imikurire y'amagufwa ziterwa n'impinduka mu ngirabuzimafatizo z'umubiri wacu. Abaganga basanzwe basuzuma iyi ndwara hafi umwana akimara kuvuka.
Tekereza nawe, iyi si ubwoko bumwe bw'indwara gusa. Ku ruhande rumwe, bamwe mu bantu bafite iyi ndwara bashobora kubaho ubuzima busanzwe nta mbogamizi zikomeye bafite. Urugero, abarebye 'Game of Thrones' bazi imiterere ya Tyrion Lannister. Umukinnyi wa filime ukinira muri iyo 'Game of Thrones', Peter Dinklage, afite indwara yitwa Achondroplasia, ikomoka mu bwoko bwa Chondrodysplasia. Abaho ubuzima bwiza kandi bwuzuye. Ariko, ku rundi ruhande, hari n'ubwoko bukomeye kandi bubabaza bw'iyi ndwara. Urugero ni Rhizomelic Chondrodysplasia Punctata (RCDP1). Iyi ndwara itera gukura nabi mu bana, ibibazo by'amagufwa, indwara zo mu mutwe , n'indwara z'amaso . Abana benshi bafite iyi ndwara ikomeye ntibakomeza kubaho nyuma y'ubwana. Ariko hari icyizere. Abashakashatsi barimo kugerageza gushaka umuti wa RCDP1.
Impamvu ni izihe?
Mu magambo make, izi ndwara ni imiterere y’uturemangingo . Ibi bivuze ko ziterwa n’impinduka cyangwa inenge zimwe na zimwe mu turemangingo turi mu turemangingo tw’umubiri wacu. Hari igihe izi nenge z’uturemangingo zishobora kuragwa n’ababyeyi ku bana. Indwara ikomeye yitwa RCDP1 ni imwe muri izo ndwara z’uruhererekane.
Ariko, ubwoko bukunze kugaragara cyane, nka Achondroplasia, bukunze guterwa n’impinduka mu buryo butunguranye. Ibi bivuze ko umwana ashobora kuyirwara nubwo nta mubyeyi n’umwe ufite iyo ndwara.
Ni ibihe bimenyetso by'iyi ndwara?
Uretse uko umuntu asa, ibimenyetso biterwa n'ubwoko bwa Chondrodysplasia afite. Ibimenyetso by'ingenzi ni ubugufi bw'igihagararo (ubugufi bw'igihagararo) n'ubunini bw'umutwe burenze ubusanzwe . Ariko hari ibindi bimenyetso bishobora kubaho. Reka turebe ibyo ari byo.
| Igice cy'umubiri aho ibimenyetso bishobora kugaragara | Ikibazo gishoboka |
|---|---|
| Iterambere ry'ubwonko | Mu bwoko bumwe na bumwe, iterambere ry'ubwonko rishobora kugira ingaruka ndetse no kugabanuka k'ubwonko. Ariko, mu bwoko nka Achondroplasia, kudakomeza k'ubwonko ntikugaragara. |
| Uruhu | Uruhu rurakomera kandi rukavunguka. |
| Umunwa | Akanwa gacitse. |
| Amaso | Kutabona neza bitewe n'indwara ya katarakte. |
| Umugongo | Kubaho kw'ubumuga bw'umugongo. |
Isuzuma rikorwa rite?
Akenshi, umuganga ashobora gukeka ko umwana afite iyi ndwara akimara kuvuka, kuko ibimenyetso nk'amaguru magufi n'umutwe munini bishobora kumenyekana byoroshye.
Kugira ngo yemeze iki kibazo, muganga yategetse ko bamukorera X-ray . X-ray igaragaza ko amagufwa yo mu maboko no ku maguru y'umwana ari magufi kandi manini bidasanzwe.
Byongeye kandi, indwara nka Achondroplasia zishobora kumenyekana ndetse no mu gupima umwana akiri mu nda ya nyina. Niba ushaka kumenya neza 100% uko indwara yanduye, hari n'ibizamini byihariye bya genetiki kuri ibyo.
Ni ubuhe buryo bwo kuvura?
Uburyo bwo kuvura umwana wawe buzaterwa n'ubwoko bwa Chondrodysplasia afite. Ikintu cy'ingenzi ugomba gusobanukirwa hano ni uko uburyo bwinshi bwo kuvura budashobora kongera uburebure bw'umwana , ariko bushobora kugabanya no gukemura ibindi bibazo by'ubuzima bifitanye isano na byo.
- Ku ndwara idakomeye nka achondroplasia: Niba umwana wawe afite ubuzima bwiza, icyo ukeneye gukora ni ukujya kwa muganga w'abana buri gihe kugira ngo urebe uko umwana wawe amerewe. Niba hari ingorane zivutse, uzakenera kumuvura.
- Mu bihe bikomeye, itsinda ry'inzobere rishobora kugira uruhare mu kuvura umwana. Abantu benshi, nk'abaganga b'imitsi n'inzobere mu mirire, bashobora gukenera kugira uruhare. Ubu buvuzi bukunze kubera mu bitaro.
Birambuye ku bijyanye n'ubuvuzi
Mu bihe bimwe na bimwe, gutanga imisemburo ikura byafashije mu gukura kw'amagufwa, ariko ntabwo ari umuti nyawo. Imisemburo ikura ntivura indwara nka achondroplasia.
Hari abantu bakoresha uburyo bwo kubaga amaguru maremare . Ariko ubu buryo ntibuvugwaho rumwe. Kubera ko bufite ibyago kandi bushobora kubabaza cyane. Kenshi na kenshi, ubu buryo bwo kubaga bwongera uburebure bwa santimetero nke gusa. Kubera ko ubu buryo bwo kubaga busaba imbaraga nyinshi mu mubiri no mu mutwe, abaganga basaba ko ubu buryo bwo kubaga busubikwa kugeza umwana akuze bihagije kugira ngo abusobanukirwe kandi abe yafata ibyemezo bye bwite.
Ni izihe ngorane zishobora guterwa n'iki kibazo?
Ubwoko bwinshi bwa chondrodysplasia ntabwo bushyira ubuzima mu kaga, ariko bushobora gutera ibibazo bibabaza kandi by'igihe kirekire. Muganga wawe ashobora kugufasha kubikemura.
| Ingorane | Ibisobanuro byoroshye |
|---|---|
| Guhumeka bigoranye | Ingano nto y'igituza ishobora gutera ibibazo byo guhumeka. |
| Ububabare bw'umugongo no gukurura uruti rw'umugongo | Impinduka mu mugongo zishobora gutera ububabare no gukomera. |
| Stenosis yo mu mugongo | Gukanda imitsi bitewe no kugabanuka k'umuyoboro unyuramo uruti rw'umugongo imbere mu ruti rw'umugongo. |
| Ibibazo bihuriweho | Kubabara ingingo no kugorwa no kugenda. |
| Indwara zikunze kugaragara mu bihaha | Impinduka mu mikorere y'ubuhumekero zishobora gutera indwara zikunze kugaragara mu bihaha. |
| Indwara zo mu mutwe | Mu bwoko bumwe na bumwe bukomeye, indwara zo mu mutwe zishobora guterwa n’ingaruka ku mikurire y’ubwonko. |
| Kubura umwuka wo gusinzira | Guhagarika guhumeka by'akanya gato mu gihe cyo gusinzira. |
Ni gute wakwifashisha wowe ubwawe n'umwana wawe?
Mu gihe ubana n'iki kibazo, inkunga kuri wowe n'umwana wawe ni ingenzi cyane. Abantu bafite iki kibazo ntibakunda gufatwa nk'abantu badasanzwe. Ariko hari igihe abantu muri sosiyete bagerageza kubasuzugura no kubasobanukirwa nabi. Cyane cyane ku ishuri, hari amahirwe menshi yo gutotezwa na bagenzi babo.
Bityo rero, ni byiza cyane gushaka inama kugira ngo bifashe umwana guhangana n'iki kibazo no gufasha abandi kubyumva. Nanone, hari amatsinda y'ubufasha yashinzwe n'imiryango ifite abana nk'aba. Binyuze muri yo, mushobora gusangira amakuru, kuganira ku byo mwanyuzemo, no kuba isoko y'imbaraga hagati yanyu.
Ubutumwa bwo kujyana mu rugo
- Chondrodysplasia si indwara imwe. Ni ijambo rusange risobanura indwara zitandukanye zigize imiterere y'amagufwa.
- Uburemere bw'iyi ndwara buratandukanye bitewe n'umuntu ku giti cye. Nubwo hari abantu bashobora kugira ingaruka nke, abandi bashobora kugira ingorane zikomeye. Abantu benshi bafite indwara nka achondroplasia babaho ubuzima bwuzuye kandi bushimishije.
- Intego nyamukuru y'ubuvuzi si ukongera uburebure, ahubwo ni ugukemura ibibazo by'ubuzima bifitanye isano (nk'ububabare bw'umugongo, ingorane zo guhumeka).
- Iyo umaze kumenya ko umwana wawe afite iyi ndwara, ni ngombwa cyane gushaka ubufasha bw'itsinda ry'abaganga b'inzobere.
- Uretse ubuvuzi, ubufasha bwo mu mutwe n'ubujyanama ku mwana n'umuryango nabyo ni ingenzi cyane. Ni ngombwa gukomeza umwana kugira ngo ashobore guhangana n'ihohoterwa rishingiye ku muryango.
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