Mukati
Zvirwere zvisingawanzo uye nherera: chii ichocho?
Chirwere chisingawanzo chirwere chinobata mumwe muvanhu ve2000, kureva kuFrance vanhu vasingasviki makumi matatu kune chirwere chakapiwa uye pamwe chete, 30 kusvika ku000 mamiriyoni evanhu. Huwandu hwezvirwere izvi hunonziwo “nherera” nekuti havabatsirike nemishonga pamwe nekuchengetwa kwakakwana. Iko kushoma kufarira mukutsvagisa nekuti ivo havape yakakosha yekutengesa nzvimbo. Zvakare gore rega rega, iyo Telethon inounganidza mari yekubatsira kufambisira mberi tsvakiridzo yezvirwere zveuromuscular.
Kuti uwane ruzivo nezvezvirwere zvenherera: maladies-orphelines.fr
Cystic fibrosis
Cystic fibrosis, kana cystic fibrosis yerwatata, chirwere chisingawanzogarwa nhaka. Ndiro rinokonzeresa kunyanya kufema uye matambudziko ekugaya nekuti ma secretions (kana mucus), anowanikwa kunyanya mubronchi, pancreas, chiropa, matumbu uye nhengo dzesikarudzi, dzakakora zvisingaite. 6 vanhu (vana nevakuru) vanotambura ne cystic fibrosis muFrance. Kubva 000, kuongororwa kwakaitwa pakuzvarwa kune vese vachangozvarwa. Inobvumira, nekutanga kuongororwa, kukurumidza uye kwakagadziridzwa kutarisirwa kwevana vanotambura ne cystic fibrosis.
Kuti uwane rumwe ruzivo: Kunda cystic fibrosis (http://www.vaincrelamuco.org/)
Duchenne tsandanyama dystrophy
Chirwere chinowanzozivikanwa uye chinonyanya kuzivikanwa chinokanganisa tsandanyama, nekuda kwekusavapo kana kuchinjwa kweprotein: dystrophin. Ihosha inogarwa nhaka yakabatana nebonde. Inoratidzwa nekurasikirwa kunofambira mberi kwesimba remhasuru uye kufema kana kutadza kwemoyo. Inotapurirwa nevakadzi, asi inobata vakomana chete. Vanenge varwere 5 muFrance.
Kuti uwane zvimwe: Sangano reFrance rinopesana nemyopathies (http://www.afm-france.org/)
Leukodystrophies
Iri zita rakaomarara rinoratidzira boka renherera genetic zvirwere. Vanoparadza central nerve system (uropi uye musana) wevana nevakuru. Dzinobata myelin, chinhu chichena chinoputira tsinga senge sheath yemagetsi. Mune leukodystrophies, myelin haichavimbisi kufambiswa kwakaringana kwemashoko etsinga. Haiumbi, inokanganisa kana kuwanda. Mhosva imwe neimwe yakasiyana asi mhedzisiro yacho inogara yakanyanya kuoma. Chirwere ichi chinobata vanhu vasingasviki mazana mashanu muFrance.
Kuti uwane zvimwe: Sangano reEuropean rinopesana neleukodystrophies, ELA (https://ela-asso.com/)
Amyotrophic lateral sclerosis kana chirwere chaCharcot
ALS kukuvadzwa kwemotor neurons iri kumberi kwenyanga yemuzongoza uye nuclei yemota yekupedzisira cranial nerves. Kwakabva chirwere ichi chinouraya uye chisingarapike hachizivikanwi. Rufu runoitika paavhareji mukati memakore maviri kusvika mashanu ekuongororwa uye kunokonzerwa, muhuwandu hwezviitiko, kune chirwere chekufema, chinowedzerwa nechirwere chechipiri chebronchi. Vanenge varwere 8 vanayo.
Kuti uwane rumwe ruzivo: The Brain and Spinal Cord Institute (ICM) (http://icm-institute.org/fr)
Marfan chirwere
Chirwere chisingawanzwisisiki chekuzvarwa nhaka, umo mubatanidzwa unoshandurwa (iyi ndiyo matishu inovimbisa kubatana uye kutsigirwa kwenhengo dzakasiyana dzemuviri). Mitezo yakasiyana zvikuru (maziso, mwoyo, majoini, mapfupa, tsandanyama, mapapu) naizvozvo inogona kukanganiswa. Marfan syndrome inobata vakomana nevasikana.
Zvinofungidzirwa kuti vanhu vanosvika makumi maviri vari kubatwa nechirwere ichi muFrance.
Kuti uwane zvimwe: mubatanidzwa Vivre Marfan (http://vivrerfan.org)
Inorwara cell anemia
Sickle cell anemia kana kuti "sickle cell anemia" chirwere chekuzvarwa nhaka chinoratidzwa nekushandurwa kwehemoglobin, puroteni inovimbisa kutakurwa kweokisijeni muropa. Chirwere ichi chinozviratidza kuvakomana pamwe chete nevasikana, kana vabereki vose vari vatapuriki. Kune angangoita gumi neshanu makesi muFrance.
Kuti uwane zvimwe: Sangano reRuzivo nekudzivirira kweSickle Cell Disease (http://www.apipd.fr/)
Osteogenesis imperfecta kana girazi bone chirwere
Chirwere chisingawanzo chizvarwa chekuzvarwa, chinoratidzwa nehukuru fragility yemapfupa. Nokudaro, mapfupa anotyoka nyore nyore, kunyange mushure mekutambudzika kwakanyanya (kudonha kubva pakakwirira, kutsvedza ...). Inoonekwa pamazera akasiyana, dzimwe nguva muhuduku, dzimwe nguva mukukura. Inobata vose vakomana nevasikana. MuFrance, vanhu 3 kusvika ku000 vane osteogenesis imperfecta.
Kuti uwane zvimwe: kusangana kwe osteogenesis imperfecta (http://www.aoi.asso.fr/)
Unoda kutaura nezvazvo pakati pevabereki here? Kupa maonero ako, kuunza uchapupu hwako? Tinosangana pa https://forum.parents.fr.
Unoda kutaura nezvazvo pakati pevabereki here? Kupa maonero ako, kuunza uchapupu hwako? Tinosangana pa https://forum.parents.fr.
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