SOBUH-Burundi Hémophilie

11/03/2026

in in

Ehe we ncuti wewe wumva icongereza isomere uko itavuúrwa neza i nuko yifashe mur aka karere turimwo ka ?

Ferdinand Mbonihankuye, journalise, turagushimiye kuri ubwo bushakashatsi ukoze.
Utari uzo vyifashe soma ukwiragize isi yose yisomere, igire ico iterereye nawe nyene uterere mur Like/Aimer , comment (er), Partager /Share..muri iyi page yacu no muri journal.

https://en.ibihe.org/haemophilia-a-little-known-but-very-real-and-costly-disease/

Update on in in general and in

18/12/2025

UYU MUSI DUSHUSHE UBWENGE, UWUTAHURA AZE KUMBWIRA MURI COMMENTAIRE, ATATAHUYE AMBAZE 😇 😇

Kumenya mu birahambaye cane.

Kenshi tuvuze hémophilie, twumve muri rusangi ndwara mvukanwa zihererekanwa zo kutavurirana canke kutavura kw'amaraso uwuzigwaye agakarirwa mukuva amaraso ku mubiri, mu kanwa, mu mazuru, mu mavi canke mu nda no mumutwe, maze ayo maraso agashobora guca mu zuru, mu bihimba vyirondoka ari menshi, mu mwanda mukuru n,ahandi naho atoba yanakomeretse! hari inkurikizi rero zo gukama amaraso kumugara no gupfa!

Muri izo harimwo hémophilie nyezina itumwa n'uko umuntu kuva asamwe aba abuze indemamubiri ituma iyo umuntu akomeretse amaraso aca ahagarara kuva (facteurs de coagulation VIII ou IX). Iyo ngwara igakarira abahungu cane.

Tuvuge uyu musi hemophilie ikarira abahungu!
Mbe ni kubera iki abahungu?

Igistina gabo kigizwe n'utunyengingo (Chromosomes) dutanga igitsina ku mwana twitwa X na Y tukadukura kubavyeyi bacu babiri.
Kugira umwana asamwe papa na mama baratanga umuganda umwumwe wese ukwiwe, kandi niko Rugiravyose yapibanze.

Rero gusama (inda) umuhungu canke umukobwa bivana nuko se na nyina baterereye. Umugabo niwe atanga igistina Kobwa canke hungu iyo habaye amabanga yabubatse. Umugabo afise XY nyina akagira XX. Ntawutanga ico adafise: Iyo hasamwe umukobwa (XX) ni se wiwe aba yabitumye kuko aba yatanze X nyina w'umwana nawe agatanga X nyene! Wabonye ko nyina ntakindi aterera, aterera ica afise misi yose nimwe muri za X zibiri, ntawutanga ico adafise🤓 Iyo havutse umuhungu (XY) ,se aba yaratanze ya Y afise wenyene mbere ariyo karanga k'umuhungu, nyina wumwana nawe yatanze X imwe muri zibiri ziwe, ubonako anifitiye XX gusa ata Y afise.

>>A. None ubona se w'umwana agwaye hémophilie (Y×) kandi afise X imwe gusa mu rubuto rwiwe kandi ikaba igwaye (nashushanije aka x gato kagwaye), umusi ariyo yaje guhura n'urubuto rw'umugore rufise XX akavyara umukobwa, ntazovuka agendana hémophilie uravye izo zimugize (Х×)? Egooo cane. Ariko kubera ko afise X imwe ikomeye ntaba kenshi agwaye naho hari aho agira ibimenyetso nko kuva amaraso menshi imisi irengeye iyisanzwe ari mu kwezi canke iyo yibarutse, ....🤓
Aha rero nta muhungu numwe azoba agwaye kuko bafise Y bakuye kuri se, Y ntigwara hémophilie!!! Abakobwa bose bazoba bayigendana bonayiha abo bazovyara nabo.

>> B. None hoho se wiwe abaye akomeye (XY), nyina akaba ayigendana (X×)? Nyina urabona ko ashobora gutanga ako kagwaye (x) ku mwana w'umuhungu agaca akura kwa se Y akavuka ari xY. Uwo muhungu (X×) yahawe na mama akagwaye azoba agwaye koko kuko ntakandi ka X afise uretse ako yahawe na nyina! Ariko umwigeme azovuka ashobora:

a. kuzoba ayigendana (ameze nk'uriya wo hejuru (Xx) niyaba asamwa haje urwo rubuto rufise x igwaye akuye kwa mama (Raba >>A ni nkaco kimwe).
b. kuzoba akomeye (XX) kuko yitomboreye asamwa haje urubuto rukomye (X) ruvuye kwa mama wiwe, rugahura na X ikomeye ivuye kwa se (XY) asanzwe atagwaye

Menya neza 30% yabagwaye iyi hémophilie yariyayadukije atanumwe bayamuyeko. Ariko bakuze nabo barashobora kuyiha uruvyaro rwabo.

Musomyi umutwe washushe? Wasobanukiwe? Micro 🎤 ni rwawe.

Call now to connect with business.

02/10/2025

BURYA INDWARA ZO KUVIRIRANA SI IZO ABAHUNGU BONYENE! N'ABAKENYEZI BARAVIRIRANA!

Ehe ibimeyetso icenda bishobora kuba vyerekana umukenyezi/umwigeme afise ingorane z'ukuvura neza kwamaraso canke kuvirirana.

Ukaba ufise ibimenyetso bibiri canke birenga muri ivyo ihutire kubaza muganga avura indwara z'amaraso, hématologue.

1. Kuvirirana umwanya munini (iyo ukomeretse, canke bagukoze kwa muganga)

2. Kuva umwuna mwinshi kandi umwanya munini [iminota irenga 10]

3. Kuvirirana cane mu binyigishi canke bagukuye iryinyo

4. Kuvirirana cane iyo wibarutse

5. Kuvirirana birenze urugero mugihe uri mu butinyanka kandi/canke ukarenza imisi 7.

6. Kuvyimbirwa cane mu nyama aha wababaye hagaheza hakomararira mu mubiri kandi hirabura.

7. Iyo hagaragaye ingwara karande yo kuvirirana mu mubaryango bawe

8. Gukama cane amaraso n'icunyunyu c'icuma, fer.

9. Iyo wama ukenera guterwa amaraso.

Vyanditswe aho musi ku sanamu ya Association francaise des hémophiles, ishirahamwe ryaba Faransa ryabagwaye ingwra zo kuvirina👇🏻👇🏻

24/09/2025

Les enfants souffrant de fréquentent aussi bien les écoles que les bien portants! Avec ou , l'enfant apprend et réussit!

Une écolière, pas comme les autres. Elle est unique et spéciale même. C'était sa deuxième Semaine à l'école "le Bercail" à Bujumbura/Nyakabiga en 1ère B primaire. Elle s'appelle ABEZA Calin Anaelle, AKA Nana. Avoir plus de 50 fractures à cause de sa maladie rare dite os de verre ne l' a pas empêché d'être à l'école. Seulement, beaucoup de defis, ...
; ; ́coleinclusive ;

18/04/2025

Merci/Murakoze/Thank you Jimbere Magazine Jimbere kugushigikira kumwe nabagwayi bo muri SOBUH-Burundi Hémophilie guhimbaza umusi mukuru mpuzamakungu wahariwe ingwara zo kuvirirana assosociation yabarwaye hémophilie no kumenyejanisha hemophilie abarundi/ pour ton soutien aux còté des patients de la à la célébration de la et la sensibilisation pour sa connaissance par les burundais.

Turabipfurije gutera intambwe.

18/04/2025

Ejo hahise kwigenekerezo rya 17 Ndamukiza nk'uvyo vyama twahimbaje umusi mpuzamakungu wahariwe ingwara zo kuvirirana (kutávurá kw'amaraso), , icivugo cari ngo" "Abakenyezi n'abigeme nabo nyene baravirirana" , "Dufatiye ku ngwara zose zo kuvirirana"

None izo ngwara zitamenyerewe, zititaweho, zerekeye abantu bake ugereranije na za malaria, igituntu, Sida...(zozo zitaweho cane n'ubushikiranganji namashirahamwe mva makungu nka za OMS Burundi nayaha iwacu, mbere zozo zizwi neza kandi zifise Imigambi izerekeye y'igihugu) ni izihe?

Ni izi zikurikira

1. Hémophilie ( iravukanwa igahererekanwa mu miryango) irimwo imice myishi harimwo izimenyerewe cane nka A na B zirangwa n'ubukene bw'indemamubiri zikorwa n'igitigu zitwa Fagiteri (facteurs de coagulation ) VIII (8) na IX (9). Fagiteri ni indemamubiri (proteines zishika 12). Izo zitetera mugufasha amaraso kuvura iyo umuntu akomeretse!
Abagwaye A na B bonyene boba bashikana abantu 3900 mu Burundi iyaba bashobora gukura. Ihuriro ry'amashirahamwe yo kwisi aharanira kwitaho ivugwa ryabo, World Federation of Hemophilia , ryakoze ivyirwa muri 2019 risanga mu bihugu vyose ku bana 100.000 bavutse 30 baba bafise hemophilie A na B. Zikarira abahungu.

2. Ingwara ya Willebrand yo kuvirirana isa na hémophilie mu bimenyetso. Irangwa no kubura indemamumubiri yiwa nyene fagiteri von willebrand. Iyo ituma plaquettes zimata ku mutsi wacitse zikunguruza na fagiteri 8.

Iyi iragwiriye kuruta, kuko yoyo kubantu 1.000 bavutse 1 aba ayifise! Mu Burundi bababa 13.000. Iyi ifata bose abagore n'abagabo co kimwe , kandi irahererekanwa mu miryango.

3. Ingwara za plaquettes mvukanwa. Plaquettes ni uturemangingo natwo two mu maraso dufasha cane kuvura kw'amaraso, utadufise amaraso agakara kuva, agakama, cnk akagabanuka cane.

4. Izindi ngwara uwukeneye fagiteri zindi zisigaye. Iyo ukenye mu maraso nizindi fagiteri muri zimwe cumi na 12 nahone ushobora kuvirirana ariko izo ntizigwiriye cane kw'isi.

Menya neza:
-izo ngwara karande, zuruhererekane navuze (maladies génétiques rares) ntituramenya aho bazipima muri laboratoire neza mu Burundi ngo bamenye bati ni iyi ni iriya... ngo iri kuri uru rugero. Uwuhazi atuyagire mur comments tujeyo.

- Hémophilie na willebrand naho utayihabwa numuvyeyi irashobora kukqiyadukizako, ukazoheza nawe ukayiha abagukomotseko.

Abakenyezi nabakobwa nabo izo zirababangamira! Nka abadashikana 40% za facteurs 8 na 9, za willebrand, barakeney kwitabwaho kuko bavirirana bari mu kwezi, bagiye kwibaruka, bakozwe, ...bigashobora gutwara ubuzima bwabo.

Ibibazo aho rero ni vyishi?

1. Vyifashe gute aha iwacu i Burundi ata na fagiteri zo kuvurisha amaraso dupima?
2. None abaganga muvyifatamwo gute?
Muragira test za TP na TCA hose mu gihugu iyo mugira ama sesarienne canke iyo mukoze abaje kwibaruka? Iyo musanze ho izo test zitameze neza muca mukora iki kandi tubona mwakira benshi cane? Iyo hoho baciye bavirirana ntabahora baca bahasiga ubuzima mubabona?

Mbega baganga, baforoma, iyo mubonye abantu bavyimvye amavi, mu nkokora, ibikonjo,...ubwo ntimuca mwibaza misi yose ko barwaye rhumatisme?

Mbega iyo musiramura abana cnk mukabakora udukomere duto, mugahongora amenyo yaboze,... ivyo bipimo mubanza kubikora, Baho Child and Youth Community nayo izobambarize?

Ijambo ni rwanyu baganga namwe mwegwa n'amagara yabantu mwese mufise inyishu kuri ibi bibazo vyabagwaye ingwara zó kutávurá.

Turongera mutwishuye!

09/04/2025

Je fête mes 4 ans chez Facebook. Merci pour votre soutien, cela ne ce serait jamais fait sans vous.🙏🤗🎉

17/01/2025

Hémophilie ni ingwara yo kutavurirana kw'amaraso, igakarira abahungu.

Menya neza uwugize imana ngo ntahitanwe no kuviriranira amaraso mu mutwe (hémorragie intracranien) canke mu nda (Hémorragie abdominale) ngo bimuviremwo urupfu, arashobora kubaho ariko afise amagara mabi birangwa na bimwe muri ibi bikurikira bikunda gushika:

1. Ibivyimba vyaduka aho yababaye mu nyama ukamengo hariyo ikibuye. ( bigaragara kuva umwana atewe incanco, canke atanguy kwavura cank gutambuka )
2. Kuva amaraso bidasanzwe naho koba agakomere gato, cnk wakozwe kwa muganga (chirurgie)
3. Kuva cane wikuje iryinyo (extraction dentaire)
4. Kuva cane iyo basiramuwe (circoncision)
5 ingingo (ivi, igikonjo, inkokora ijisho ryikirenge, ...) zivyimvye, n'ibihimba vyegeranye binyunyuka iyo bimaze igihe kinini bivyimvye.

Menya neza, ufise canke ubonye uwufise kimwe muri ivyo bimenyetso, wotwandikira kuri whatsapp 76 47 28 01 tuguhe impanuro.

Sangiza nabarundi benshi batayizi canke bayitiranya nuburozi bwananiye abaganga atari vyo.

Murakoze