Chilichonse chomwe mukufuna kudziwa za matenda osowa

Matenda osowa ndi amasiye: ndichiyani?

Matenda osowa ndi matenda omwe amakhudza munthu mmodzi mwa anthu a 2000, mwachitsanzo ku France anthu osakwana 30 chifukwa cha matenda omwe anapatsidwa ndipo onse, anthu 000 mpaka 3 miliyoni. Ambiri mwa matendawa amanenedwanso kuti ndi "amasiye" chifukwa sapindula ndi mankhwala komanso chisamaliro chokwanira. Palibe chidwi chofufuza chifukwa sapereka malo ogulitsa kwambiri. Komanso chaka chilichonse, Telethon imasonkhanitsa ndalama zothandizira kupititsa patsogolo kafukufuku wa matenda a neuromuscular.

Kuti mudziwe zambiri za matenda amasiye: maladies-orphelines.fr

Cystic fibrosis

Cystic fibrosis, kapena cystic fibrosis ya kapamba, ndi matenda osowa kwambiri omwe timatengera kwa makolo. Amayambitsa makamaka kupuma komanso kugaya chakudya chifukwa zotulutsa (kapena ntchofu), zomwe zimapezeka makamaka mu bronchi, kapamba, chiwindi, matumbo ndi kumaliseche, ndizokhuthala modabwitsa. Anthu 6 (ana ndi akulu) amadwala cystic fibrosis ku France. Kuyambira 000, kuyezetsa kwachitika pakubadwa kwa ana obadwa kumene. Zimalola, pozindikira msanga, chisamaliro chofulumira komanso chosinthika cha ana omwe ali ndi cystic fibrosis.

Kuti mudziwe zambiri: Gonjetsani cystic fibrosis (http://www.vaincrelamuco.org/)

Duchenne muscular dystrophy

Matenda odziwika kwambiri komanso odziwika bwino a minofu yofooketsa, chifukwa chosowa kapena kusintha kwa mapuloteni: dystrophin. Ndi matenda obadwa nawo okhudzana ndi kugonana. Amadziwika ndi kuchepa kwapang'onopang'ono kwa mphamvu ya minofu ndi kupuma kapena kulephera kwa mtima. Amafalitsidwa ndi amayi, koma amakhudza anyamata okha. Pafupifupi odwala 5 ku France.

Kuti mudziwe zambiri: Bungwe la France motsutsana ndi myopathies (http://www.afm-france.org/)

Leukodystrophy

Dzina lovutali limapereka gulu la matenda obadwa nawo amasiye. Iwo amawononga chapakati mantha dongosolo (ubongo ndi msana) ana ndi akulu. Amakhudza myelin, chinthu choyera chomwe chimaphimba mitsempha ngati sheath yamagetsi. Mu leukodystrophies, myelin samatsimikiziranso kuyendetsa bwino kwa mauthenga a mitsempha. Sizimapanga, zimawonongeka kapena zimakhala zochuluka kwambiri. Mlandu uliwonse ndi wapadera koma zotsatira zake zimakhala zovuta kwambiri. Matendawa amakhudza anthu osakwana 500 ku France.

Kuti mudziwe zambiri: European Association motsutsana ndi leukodystrophies, ELA (https://ela-asso.com/)

Amyotrophic lateral sclerosis kapena matenda a Charcot

ALS ndi kuwonongeka kwa ma neuroni amtundu womwe uli ku nyanga yakutsogolo ya msana ndi nyukiliya ya minyewa yomaliza ya cranial. Chiyambi cha matendawa ndi osachiritsika sichidziwika. Imfa imapezeka pafupifupi mkati mwa zaka ziwiri kapena zisanu za matenda ndipo imachitika, nthawi zambiri, ndi matenda a kupuma, omwe amakulitsidwa ndi matenda achiwiri a bronchial. Pafupifupi odwala 8 ali nawo.

Kuti mudziwe zambiri: The Brain and Spinal Cord Institute (ICM) (http://icm-institute.org/fr)

Matenda a Marfan

Ndi matenda osowa obadwa nawo, momwe minofu yolumikizira imasinthidwa (iyi ndi minofu yomwe imatsimikizira kugwirizana ndi kuthandizira kwa ziwalo zosiyanasiyana za thupi). Ziwalo zosiyana kwambiri (maso, mtima, mafupa, mafupa, minofu, mapapo) zimatha kukhudzidwa. Matenda a Marfan amakhudza anyamata ndi atsikana omwe.

Akuti pafupifupi anthu 20 akukhudzidwa ndi matendawa ku France.

Kuti mudziwe zambiri: bungwe la Vivre Marfan (http://vivrerfan.org)

Matenda a m'thupi

Sickle cell anemia kapena "sickle cell anemia" ndi matenda obadwa nawo omwe amadziwika ndi kusintha kwa hemoglobin, mapuloteni omwe amaonetsetsa kuti mpweya umayenda m'magazi. Matendawa amawonekera mwa anyamata komanso atsikana, ngati makolo onse ali opatsirana. Pali milandu pafupifupi 15 ku France.

Kuti mudziwe zambiri: Association for Information and Prevention of Sickle Cell Disease (http://www.apipd.fr/)

Osteogenesis imperfecta kapena matenda a mafupa a galasi

Ndi osowa cholowa matenda, yodziwika ndi lalikulu fupa fragility. Chifukwa chake, mafupa amathyoka mosavuta, ngakhale atavulala kwambiri (kugwa kuchokera kutalika kwake, kutsika ...). Amawonekera pazaka zosiyanasiyana, nthawi zina ubwana, nthawi zina akakula. Zimakhudza anyamata ndi atsikana omwe. Ku France, anthu 3 mpaka 000 ali ndi osteogenesis imperfecta.

Kuti mudziwe zambiri: mgwirizano wa osteogenesis imperfecta (http://www.aoi.asso.fr/)

Kodi mukufuna kukambirana za izo pakati pa makolo? Kuti mupereke maganizo anu, kubweretsa umboni wanu? Timakumana pa https://forum.parents.fr. 

Kodi mukufuna kukambirana za izo pakati pa makolo? Kuti mupereke maganizo anu, kubweretsa umboni wanu? Timakumana pa https://forum.parents.fr. 

1 Comment

  1. Po dua te per kte bised

Siyani Mumakonda