Ese wigeze ubona ko amaguru y'umwana wawe ari maremare gato kurusha andi? Cyangwa uruhande rumwe rw'isura ye rusa n'aho runini kurusha urundi? Hari igihe ibi bintu bishobora kuba ibisanzwe. Ariko, hari abana bashobora kugira indwara idakunze kugaragara aho ibice by'umubiri wabo biba binini cyane. Uyu munsi turimo kuvuga ku byiza by'iyo ndwara. Ntugatinye kubibona, icy'ingenzi ni ukubyumva.
Mu magambo make, izi NZUNGU ni izihe?
PROS zishobora kumvikana nk'izigoye. Izina ryayo ryuzuye ni
PIK3CA-Related Overgrowth Spectrum . Mu magambo make, PROS si indwara imwe. Ni itsinda ry'indwara zidasanzwe, zifitanye isano zituma ibice by'umubiri bikura binini cyane cyangwa bidasanzwe. Nk'uko hari amabara menshi mu mukororombya, hari indwara nyinshi zitandukanye munsi y'umutuku wa PROS. Ikintu kimwe izi ndwara zose zihuriyeho ni uko ziterwa n'impinduka mu ngirabuzimafatizo yitwa 'PIK3CA' mu mubiri. Ibi
si ikosa ry'umuntu . Iyi ni impinduka itunguranye mu ngirabuzimafatizo ibaho nyuma yuko umwana asamwe mu nda.
Igikuru ni uko abantu bose bafite ubumuga butandukanye. Ibimenyetso by'umwana umwe bishobora kuba bitandukanye n'iby'undi. Bityo rero imiterere y'umwana wawe ni yihariye.
Hari ibintu byinshi bisanzwe bigaragara mu bihe by'abakora neza. Reka turebe ibyo ari byo.
| Ibimenyetso | Ibisobanuro byoroshye |
|---|
| Kwagura ibice by'umubiri | Kwaguka kudasanzwe kw'igice kimwe cyangwa byinshi by'umubiri, nko ku kuboko, ukuguru, cyangwa urutoki. |
| Impinduka mu bwonko | Hari abana bafite ubwonko bwagutse cyangwa igice kimwe cy'ubwonko. |
| Ibibyimba bifite ibinure | Kuvuka kwa kanseri y'ibinure mu bice bitandukanye by'umubiri, cyane cyane mu bice nko mu nda. |
| Impinduka mu magufwa | Indwara nk'ubumuga bw'amagufwa na scoliosis. |
| Guhindura intoki | Intoki cyangwa amano birebire cyane, byagutse, cyangwa bivanze. |
| Uduheri tw'uruhu | Uduheri twijimye ku ruhu cyangwa uduce duto duto mu bice bimwe na bimwe. |
| Ibibazo by'imitsi y'amaraso | Ukwiyongera kudasanzwe kw'imitsi y'amaraso (ubumuga bw'imitsi), bishobora kongera ibyago byo kubyimba kw'amaraso. |
| Ibindi bintu | Imitsi igabanuka, gucika intege, no gutinda mu myigire cyangwa iterambere ry'ubwenge. |
Ubwoko butandukanye bw'IBYIZA n'imiterere yabyo
Abaganga bashyira mu byiciro indwara za PROS hashingiwe ku bimenyetso umwana agaragaza. Reka turebe ubwoko bumwe bw'ingenzi n'imiterere yabwo.
Indwara ya CLOPES
Abana bafite iyi ndwara bashobora kugira impinduka mu mitsi y'amaraso zigaragara nk'uduheri twijimye ku ruhu n'intoki zidasanzwe igihe bavuka.
Ibindi bimenyetso bya CLOPES syndrome
| Ubunyobwa burimo ibinure | Ivuka ry'ibibyimba bikozwe mu binure mu mubiri. |
| Impinduka z'uruhu | Uduheri cyangwa ibibyimba by'uruhu. |
| Impinduka mu magufwa | Ibihe nk'indwara ya scoliosis. |
| Impinduka mu ngingo n'amaguru | Intoki nini, amaguru n'amaboko bikura mu buryo bungana. |
| Ibibazo by'impyiko | Impyiko imwe irabura cyangwa ni nto. |
Iyi ndwara igira ingaruka ku bwonko no ku bindi bice byinshi by'umubiri. Abana benshi barwaye MCAP bavukana umutwe munini cyane. Umutwe ushobora gukura vuba mu mwaka wa mbere w'ubuzima.
Ibimenyetso bya syndrome ya MCAP
| Kwagura ubwonko | Kwaguka k'ubwonko bwose cyangwa kimwe cya kabiri cy'ubwonko. |
| Impinduka mu maso | Amasaya n'iminwa byuzuye. |
| Guhindura ibara ry'uruhu | Impinduka mu miterere y'uruhu (cyane cyane mu maso) bitewe n'impinduka mu mitsi mito y'amaraso (capillaries). |
| Intege nke z'imitsi | Kugabanuka kw'ubukomere mu mitsi y'umubiri. |
| Ibindi bintu | Gufatwa n'indwara zo mu mutwe, ubumuga bwo mu mutwe, gutinda kuvuga, gukubitana cyangwa kugira intoki nyinshi, guhindagurika cyane mu ngingo, no guhinduka k'umutima. |
Hemimegalencephaly
Iyi ndwara ikunze kwibasira uruhande rumwe rw'ubwonko. Ishobora kubaho ubwayo cyangwa hamwe n'izindi ndwara.
Ibimenyetso by'ingenzi: impinduka ku ruhande rumwe rw'ubwonko, umutwe munini kandi utaringaniye, ibicurane , ubumuga bw'igice cy'uruhande rumwe rw'umubiri, n'ubutinda bw'imikurire.
Lipomatosis yinjira mu maso
Ikintu nyamukuru kiranga ibi ni uko uruhande rumwe rw'isura ari runini kurusha urundi.
Ibindi bimenyetso: ibibyimba bitari kanseri biba mu mitsi (cyane cyane ku rurimi cyangwa ku minwa), ururimi rwagutse, amagufwa yo mu maso yagutse, ndetse n'amenyo ahoraho atangira gucika.
Ni gute wakwitwara muri iki kibazo?
IBYIZA bishobora kwiyongera uko igihe kigenda gihita. Bitewe n'ibice by'umubiri byangiritse, umwana wawe ashobora kugorwa no kugenda no gukora imirimo ya buri munsi. Ariko
inkuru nziza ni uko hari uburyo bwo kuvura bushobora gufasha mu gucunga iyo ndwara no koroshya ubuzima bw'umwana wawe. Iki si ikintu ugomba guhangana na cyo wenyine. Ni ngombwa gukorana na
muganga w'umwana wawe n'abandi bahanga (urugero, inzobere mu by'amagufwa, inzobere mu by'imitsi) kugira ngo muganire kandi musobanukirwe uburyo bwo kuvura bwiza ku mwana wawe. Hari igihe ibimenyetso bishobora gukemurwa binyuze mu bintu nko kubagwa, imiti, cyangwa physiotherapy.
Ubutumwa bwo kujyana mu rugo
- INDWARA NZIZA si indwara imwe, ahubwo ni uruhurirane rw'indwara nyinshi zidasanzwe aho ibice by'umubiri bikura mu buryo budasanzwe.
- Iyi ndwara iterwa n'impinduka mu miterere y'umubiri, atari ikosa ry'ababyeyi.
- Buri mwana ufite PROS aratandukanye. Ibimenyetso bishobora gutandukana cyane bitewe n'umwana umwe.
- Niba ubonye ko hari ikibazo cyo kudahuza, gukura kudasanzwe, cyangwa ibindi bintu biteye amakenga ku gice icyo ari cyo cyose cy'umubiri w'umwana wawe, vugana na muganga wawe vuba .
- Nubwo iyi ndwara idashobora gukira burundu, hari uburyo bwo kuvura bushobora gufasha mu kugenzura ibimenyetso no kunoza ubuzima bw'umwana.
IBYIZA, PIK3CA, indwara yo gukura cyane, indwara ya CLOPES, MCAP, indwara z'abana, indwara z'uturemangingo
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