Ese umwana wawe agwa kenshi? Cyangwa se ujya ubona bimugora guhaguruka, kuzamuka ingazi, kwiruka, cyangwa gusimbuka? Hari igihe ibi bibaho ku bana bato uko bakura. Ariko, hari igihe hashobora kubaho ikibazo ku mitsi iri inyuma yabo gikeneye kwitabwaho. Niyo mpamvu tugiye kuvuga ku itsinda ry'indwara zigabanya imitsi buhoro buhoro.
Kurwara kw'imitsi ni iki?
Muri make, indwara zo mu mitsi ni izina rusange ry’itsinda ry’indwara zigabanya intege z’imitsi y’umubiri wacu uko igihe kigenda gihita zikagabanya ubworoherane bwayo. Impamvu nyamukuru ibitera ni inenge mu turemangingo dufasha kugira imitsi yacu imeze neza.
Hari abantu bashobora kuyirwara bakiri bato, abandi ntibagaragaze ibimenyetso kugeza bagejeje ku myaka icumi cyangwa cumi n'itanu, cyangwa ndetse n'abakiri bato.
Uburyo iyi ndwara igira ingaruka kuri buri muntu buratandukanye. Biterwa n'ubwoko bw'indwara. Ku bantu benshi, iyi ndwara ishobora kwiyongera buhoro buhoro uko igihe kigenda gihita. Hari n'abantu bashobora gutakaza ubushobozi bwo kugenda cyangwa kuvuga. Ariko, ibi ntibibaho kuri bose . Hari abantu babaho imyaka myinshi mu buzima busanzwe bafite ibimenyetso byoroheje. Rero nta mpamvu yo gutinya mbere y'igihe.
Ni ubuhe bwoko bw'ingenzi bw'ibi?
Hari ubwoko burenga 30 bwa dystrophy y'imitsi. Ariko hari ubwoko 9 bw'ingenzi tubona kenshi. Buri bwoko butandukanye bitewe na gene ibutera, imitsi yangiritse, imyaka ibimenyetso bitangira, ndetse n'umuvuduko indwara itera.
| Izina ry'indwara | Ibisobanuro bigufi |
|---|---|
| Kurwara imitsi ya Duchenne (DMD) | Ubu ni bwo bwoko bukunze kugaragara cyane. Bukunze kwibasira abahungu. Butangira hagati y'imyaka 3-5. |
| Kurwara imitsi ya Becker | Bisa na Duchenne, ariko ibimenyetso ntabwo bikomeye cyane. Ibi bikunze kugaragara no ku bahungu. Ibimenyetso bigaragara hagati y'imyaka 11 na 25. |
| Kurwara imitsi ya myotonic | Ubwoko bukunze kugaragara cyane mu bantu bakuru. Ikimenyetso nyamukuru ni ukunanirwa kuruhuka imitsi nyuma yo gucika. Ishobora kwibasira abagabo n'abagore. Akenshi itangira mu myaka ya za 20. |
| Kurwara kw'imitsi yo mu nda (Congenital muscular dystrophy) | Bitangira umwana avutse cyangwa nyuma gato yo kuvuka. |
| Kurwara imitsi y'amaguru n'imigozi | Igira ingaruka ku mitsi ikikije ikibuno n'amatugu. Ishobora gutangira mu gihe cy'ingimbi cyangwa 20. |
| Kurwara imitsi yo mu maso (facioscapulohumeral muscular dystrophy) | Igira ingaruka ku mitsi yo mu maso, ku bitugu no ku maboko yo hejuru. Ishobora kwibasira abantu kuva mu bwana kugeza ku bantu bakuru bari mu kigero cy'imyaka 40. |
| Kurwara imitsi yo mu birenge (distal muscular dystrophy) | Igira ingaruka ku mitsi y'amaboko, amaguru, amaboko n'ibirenge. Akenshi itangira hagati y'imyaka 40-60. |
| Kurwara kw'imitsi yo mu maso (oculopharyngeal muscular dystrophy) | Bitangira mu myaka ya za 40 na 50. Bitera intege nke z'imitsi mu maso, mu ijosi no mu bitugu, amaso arembye (ptosis), no kugorwa no kumira (dysphagia). |
| Emery-Dreifuss indwara yo kubura imitsi | Akenshi yibasira abahungu kandi itangirana n'imyaka 10. Uretse intege nke z'imitsi, hari n'ibibazo by'umutima bishobora no kubaho. |
Kuki ubwoko bw'indwara butera? (Impamvu)
Iyi ndwara ishobora kuragwa, cyangwa ikaba yatangira kugaragara muri wowe cyangwa ku mwana wawe nta muntu wo mu muryango wawe uyirwaye. Ibi biterwa n'inenge iri mu turemangingo .
Tekereza kuri ibi, izi gene zigisha uturemangingo mu mubiri wacu gukora poroteyine zikeneye kugira ngo zikore imirimo itandukanye. Ni nk'uburyo bwo guteka ifunguro. Iyo gene ifite inenge, uturemangingo dushobora gukora poroteyine itari yo, poroteyine nkeya kurusha iyo dukeneye, cyangwa poroteyine yangiritse.
Abantu bafite indwara ya dystrophy y'imitsi bafite inenge mu turemangingo dukora poroteyine zituma imitsi ikomeza kugira ubuzima bwiza. Urugero, muri Duchenne na Becker, poroteyine yitwa dystrophin ikorwa gake cyane. Iyi poroteyine ya dystrophin ikomeza imitsi kandi ikayirinda kwangirika. Iyo iyi poroteyine itakaye, imitsi irangirika byoroshye kandi igacika intege.
Wabimenya ute? (Ibimenyetso)
Ibimenyetso by'ubwoko bwinshi bw'iyi ndwara bitangira kugaragara mu bwana cyangwa mu bwangavu. Muri rusange, umwana ufite iyi ndwara ashobora kugaragaza ibimenyetso bikurikira:
- Kugwa kenshi
- Kumva ufite intege nke mu mitsi
- Kuribwa imitsi
- Kugorwa no guhaguruka uvuye mu mwanya wo kwicara, kuzamuka ingazi, kwiruka, cyangwa gusimbuka
- Kugenda ku mano cyangwa kugendera ku mazi
Ni ngombwa ko nk'ababyeyi twitondera imigendere y'abana bacu, cyane cyane imikinire yabo. Niba hari ikintu kidasanzwe ubonye, ntugatinye kuvugana na muganga.
Byongeye kandi, hari abantu bashobora no kugira ibimenyetso nk'ibi:
- Indwara ya Scoliose
- Ijisho rimanuka
- Ibibazo by'umutima
- Kugorwa no guhumeka cyangwa kumira ibiryo
- Ubumuga bwo kutabona neza
- Intege nke z'imitsi yo mu maso
Ni gute muganga abyemeza? (Isuzuma)
Muganga azakora ibizamini byinshi kugira ngo amenye niba umwana wawe afite intege nke z'imitsi. Ubwa mbere, azakora isuzuma rusange ry'umubiri, akubaze amateka y'ubuzima bw'umuryango wawe, kandi akubaze ibimenyetso by'umwana wawe.
Nyuma y’ibyo, ibizamini byinshi nk’ibi bishobora gukorwa kugira ngo hamenyekane izindi ndwara zishobora gutera intege nke z’imitsi no gusuzuma indwara burundu.
| Izina ry'Ikizamini | Mu magambo make, ibi nibyo ukora... (Ibisobanuro Byoroshye) |
|---|---|
| Gupima amaraso | Ingano ya enzymes zimwe na zimwe zirunda mu maraso iyo imitsi yangiritse iragenzurwa. |
| Electromyography (EMG) | Udukoresho duto tw’amashanyarazi twinjizwa mu mitsi maze imikorere y’amashanyarazi y’imitsi igapimwa. |
| Kuvura imitsi | Agace gato cyane k'imitsi gafatwa hakoreshejwe urushinge hanyuma kagasuzumwa hifashishijwe mikorosikopi. Ibi bishobora kugaragaza poroteyine zibura cyangwa zangiritse. |
| Electrocardiogram (EKG/ECG) | Ibimenyetso by'amashanyarazi by'umutima bipimwa kugira ngo harebwe niba umuvuduko w'umutima n'umuvuduko w'umutima ari byiza. |
| Ibipimo by'uturemangingo | Mu gupima amaraso, birashoboka kumenya neza utunyangingo dufite inenge dutera intege nke z'imitsi. |
Ni ubuhe buryo bwo kuvura?
Muri iki gihe, nta muti uhari wo kuvura indwara yo mu mitsi. Ariko, hari uburyo bwinshi bwo kuvura bushobora gufasha mu kugenzura ibimenyetso, koroshya ubuzima, no guha umwana wawe ubuzima bwiza bushoboka. Muganga wawe azagusaba uburyo bwiza bwo kuvura hashingiwe ku bwoko bw'indwara umwana wawe afite.
- Ubuvuzi bw'umubiri: Imyitozo itandukanye no kunanura imitsi bifasha imitsi gukomera no koroha.
- Ubuvuzi bw'akazi:Umwana yigishwa uburyo bwo gukora imirimo ya buri munsi (urugero: kwambara, kwandika) uko ashoboye kose. Ananigishwa uburyo bwo gukoresha ibikoresho nk'intebe z'abamugaye n'inkoni.
- Ubuvuzi bwo kuvuga: Niba ufite ikibazo cyo kuvuga bitewe n'intege nke mu maso cyangwa mu mitsi yo mu muhogo, tuzakwigisha uburyo bworoshye bwo kubikora.
- Imiti:
- Imiti yihariye, nka `Eteplirsen (Exondys 51)`, yongera umusaruro wa dystrophin kuri zimwe mu ndwara za DMD.
- Imiti igabanya imitsi itera imitsi ku gahanga.
- Imiti y'umuvuduko w'amaraso ivura ibibazo by'umutima.
- Steroid nka `Prednisone` zishobora kugabanya kwangirika kw'imitsi. Ariko, izi zigira ingaruka mbi kandi zigomba gukoreshwa gusa ku nama za muganga .
- Kubagwa: Kubagwa bishobora kuba ngombwa ku bibazo nk'indwara yo mu mugongo n'ibibazo by'umutima.
Ibintu ugomba kuzirikana mu gihe urera umwana
Ni ibisanzwe ko ababyeyi bumva bababaye iyo imbaraga z'umwana wabo zigenda zigabanuka buhoro buhoro kandi badashobora kwiruka no gukina nk'abandi bana. Ariko ushobora gufasha umwana wawe kubaho neza nubwo hari iki kibazo.
- Gutanga indyo nziza: Indyo yuzuye ifasha umwana wawe kugumana ibiro byiza. Ibi bishobora kugabanya ibintu nko guhumeka nabi.
- Komeza gukora imyitozo ngororamubiri: Imyitozo ngororamubiri idatera ingaruka mbi nko koga ishobora gufasha gukomeza imitsi. Baza umuganga wawe w’umubiri ibi.
- Koresha ibikoresho bifasha umwana: Shishikariza umwana wawe gukoresha amagare y'abamugaye, imbago, n'ibindi bibaye ngombwa.
- Komeza gukomera: Ganira n'umuryango, inshuti, cyangwa umujyanama ku bijyanye n'imihangayiko, agahinda n'uburakari uri kumva muri uru rugendo. Nanone, amatsinda y'ubufasha hamwe n'abandi babyeyi b'abana bafite iyi ndwara ashobora kuba isoko ikomeye y'imbaraga.
Iyi ndwara ntigira ingaruka ku bantu bose kimwe. Hari abana batakaza imbaraga z'imitsi vuba cyane. Abandi bashobora kuzitakaza vuba. Kubwibyo, ni ngombwa kuganira na muganga w'umwana wawe ku kibazo cye no gutegura gahunda yo kumuvura imubereye.
Ubutumwa bwo kujyana mu rugo
- Kurwara imitsi ni indwara iterwa n'uturemangingo ituma imitsi icika intege uko igihe kigenda gihita.
- Ibimenyetso bya mbere ku bana bishobora kuba birimo kugwa kenshi, kugorwa no kubyuka, no kugenda ku maguru.
- Kubera ko hari ubwoko bwinshi bw'iyi ndwara, ni ngombwa gushaka inama kwa muganga kugira ngo umenye neza indwara.
- Nubwo nta muti wuzuye uhari, ubuvuzi bw'umubiri, imiti, n'ubundi buryo bwo kuvura bushobora kugenzura ibimenyetso no gukomeza ubuzima bwiza.
- Ni ingenzi cyane gutanga ubufasha mu by'imitekerereze no kugira ibidukikije byiza ku mwana n'umuryango. Vugana na muganga wawe ku mpungenge iyo ari yo yose.
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