Kodi mwana wanu akuvutika ndi vuto la kupunduka? Tiyeni tiphunzire za Arthrogryposis Multiplex Congenita.

Palibe mawu ofotokozera chimwemwe chomwe timamva tikamaona mwana wakhanda, sichoncho? Koma nthawi zina, makanda athu amatha kukhala ndi mavuto ang'onoang'ono azaumoyo. Lero tikambirana za vuto lomwe silimamveka kawirikawiri, koma ndilofunika kwambiri kulidziwa. Limenelo ndi vuto lotchedwa arthrogryposis.

Kodi Arthrogryposis ndi chiyani?

Mwachidule, Arthrogryposis Multiplex Congenita (AMC) ndi matenda omwe mwana amabadwa ndi zimfundo zingapo zomwe sizingathe kupindika kapena kuwongoka . 'Artho' amatanthauza zimfundo, ndipo 'gryposis' amatanthauza kupindika kapena kupindika. Ili si matenda amodzi, koma gulu la matenda opitilira 300. Mwachitsanzo, limatha kuwoneka ndi matenda a minofu monga Muscular Dystrophy ndi matenda a majini monga Trisomy 18 - Edwards Syndrome.

Tsopano, tikamanena kuti 'kuuma kwa mafupa', madokotala amatcha izi '(contracture)'. Izi zikutanthauza kuti minofu ya mwana, khungu, ndi minyewa ya m'chiuno '(tendons)' zimakhala zolimba kwamuyaya , kotero kuti mafupawo amafupikitsidwa, ndipo sangathe kupindika kapena kutambasula bwino. Taganizirani izi, mafupa ndi malo monga manja athu, chiuno, mawondo, ndi khosi. Mafupa awa ndi omwe amatithandiza kusuntha. Chifukwa chake, mwa makanda omwe ali ndi arthrogryposis, mafupawa amavutika kusuntha bwino. Angakhale olimba kwathunthu, kapena akhoza kukhala opindika, kapena akhoza kukhala owongoka ndi omangika pamalo amodzi .

Kodi zizindikiro zapadera zomwe mwana amaonetsa ndi ziti pamenepa?

Makanda omwe ali ndi arthrogryposis amakhala ndi makhalidwe osiyanasiyana akamabadwa. Komabe, makhalidwe amenewa amatha kusiyana kuchokera kwa mwana mmodzi kupita kwa wina, ngakhale m'banja lomwelo. Makhalidwe odziwika kwambiri ndi awa:

• Mapewa amatsitsidwa ndipo thupi limatembenuzidwa mkati.
• Chimene chili ndi chigongono chotambasulidwa (chovuta kupindika).
• Imene manja ndi zala zake zinapindika mkati ndi kumamatira.
• Mafupa a m'chiuno mwina asokonekera.
• Uyo amene mawondo ake atambasulidwa.
• Mapazi amatembenuzidwa pansi ndi mkati (monga `(Clubfoot)`).
• Msana ukhoza kupindika mbali imodzi (kupindika kwa msana).

Zizindikiro zimenezi sizili zofanana kwa aliyense. Anthu ena akhoza kukhala ndi chimodzi kapena ziwiri mwa izi, pomwe ena akhoza kukhala ndi zambiri. Komanso, zimatha kukhudza mafupa akuluakulu komanso mafupa ang'onoang'ono . Izi zikutanthauza kuti zimatha kukhudza chilichonse kuyambira m'zala mpaka pamapewa.

Kodi pali mitundu ikuluikulu ya arthrogryposis?

Inde, makamaka tikulankhula za mitundu iwiri:

• (Amyoplasia) : Pachifukwa ichi , mafupa a miyendo amakhudzidwa kwambiri .
• (Distal Arthrogryposis) : Mu mtundu uwu , kuuma kumachitika m'manja ndi mapazi (malo olumikizirana akutali) , ndipo malo olumikizirana akuluakulu monga mapewa ndi chiuno sakhudzidwa kwambiri.

Kodi vutoli ndi lofala bwanji?

Matenda a Arthrogryposis si matenda ofala kwambiri .Vutoli limapezeka mwa mwana mmodzi mwa ana 3,000 obadwa amoyo.

Kodi ichi ndi chinthu chobadwa nacho? Kodi ndi chinthu chomwe chimachokera ku mibadwomibadwo?

Arthrogryposis ndi matenda obadwa nawo . Izi zikutanthauza kuti zizindikiro zimayamba munthu asanabadwe . Nthawi zambiri , chifukwa chenicheni sichidziwika . Komabe, n'zotheka kuti chimayambitsidwa ndi matenda a majini . Akatswiri apeza majini opitilira 400 osinthika okhudzana ndi arthrogryposis. Apezanso kulumikizana ndi matenda opitilira 35 a majini .

Kodi kusiyana pakati pa arthrogryposis ndi contracture yobadwa nayo yokha ndi kotani?

Funso labwino. `(Isolated Contracture)` zikutanthauza kuti pali kuuma kwa mafupa m'mbali imodzi yokha ya thupi . Mwachitsanzo, kodi mudawonapo ana ena obadwa ndi phazi limodzi lokha lopindika mkati? Zimenezi zimatchedwa `(Clubfoot)`. `(isolated contracture)`. Koma mu arthrogryposis, pakhoza kukhala kuuma kwa mafupa m'mbali ziwiri kapena zingapo za thupi .

Kodi n’chiyani chimayambitsa arthrogryposis (AMC)?

Nthawi zambiri, chifukwa chenicheni cha arthrogryposis sichidziwika bwino . Komabe, pali zinthu zingapo zomwe zimaganiziridwa kuti zimayambitsa vutoli:

• Mwana wosabadwayo (khanda) amakhala ndi mphamvu zochepa zosuntha pamene akukula m'mimba . Izi zitha kuchitika chifukwa chosakhala ndi madzi okwanira amniotic, kukhala ndi mwana wina wosabadwayo (monga mapasa), kapena mawonekedwe osazolowereka a chiberekero. Mwana wosabadwayo akalephera kusuntha bwino mafupa ake, minofu yowonjezera imasonkhana mozungulira mafupawo, kuwapanikiza .
• Matenda ena omwe mayi wapakati ali nawo . Mwachitsanzo, matenda monga `(Multiple Sclerosis)`. Ngati wina m'banja mwanu ali ndi `(Multiple Sclerosis)`, inunso mungakhale pachiwopsezo chachikulu.
• Matenda a majini . Mwachitsanzo, matenda monga "Muscular Dystrophy".
• Matenda a Central Nervous System . Izi zikuphatikizapo ubongo ndi msana. Zitsanzo zikuphatikizapo matenda monga `(Moebius Syndrome)` ndi `(Spina Bifida - Meningomyelocele)`.
• Matenda a Mitsempha ndi Minofu . Mwachitsanzo, Myasthenia Gravis.
• Matenda a Minofu Yolumikizana . Zitsanzo zikuphatikizapo `(Dysplasia)` ndi `(Metatropic Dwarfism)`.

Nthawi zina, amaganiza kuti kuphatikiza kwa majini ndi zinthu zachilengedwe kungathandize kuyambitsa arthrogryposis.

Kodi zizindikiro za arthrogryposis ndi ziti kwenikweni?

Zizindikiro za arthrogryposis zimatha kusiyana kwambiri kuchokera kwa munthu ndi munthu . Ngakhale m'banja lomwelo, zizindikiro za munthu mmodzi zimatha kukhala zosiyana kapena zoopsa kwambiri kuposa wina.

Zizindikiro za matenda onse ndi izi:

• Kulephera kusuntha mafupa ang'onoang'ono ndi akuluakulu.
• Mwina malo olumikizirana ang'onoang'ono ndi akuluakulu sangasunthike konse.
• Kuchepa kwa kukula kwa minofu (minofu yopanda pulasitiki).
• Miyendo yake ndi yofewa komanso yooneka ngati chubu.
• Kakhungu kofanana ndi khungu (kuphimba minofu yofewa) kamapangika pamwamba pa mafupa, zomwe zimalepheretsa kuyenda kwa mafupa.

Zinthu zina zomwe anthu ambiri amaziona :

• Mafupa ataliatali m'manja ndi m'miyendo ndi oonda kwambiri ndipo amasweka mosavuta.
• Cryptorchidism ndi kulephera kwa machende (machende) kulowa m'mimba mwa anyamata.

Zinthu zomwe anthu ochepa okha amaona :

• Mawondo, zigongono, kapena chiuno chosweka.
• Mavuto ndi kapangidwe ka dongosolo la mitsempha (ubongo wanu ndi msana).
• Mavuto ndi momwe dongosolo la mitsempha yapakati limagwirira ntchito (ndiko kuti, momwe limagwirira ntchito).

Anthu omwe ali ndi amyoplasia nthawi zambiri sakhala ndi mavuto ndi ziwalo zamkati kapena magwiridwe antchito a ubongo . Komabe, pafupifupi 10% amatha kukhala ndi mavuto ndi mimba. Zitsanzo:

• Gastroschisis: Izi zikutanthauza dzenje m'mimba.
• `(Intestinal Atresia)`: Izi zikutanthauza kutsekeka kwa matumbo.

Malumikizidwe a miyendo ndi omwe amakhudzidwa kwambiri. Malumikizidwe a manja ndi omwe amatsatira. Kuphatikiza apo, malumikizidwe awa amathanso kukhudzidwa pafupipafupi:

• Mapewa
• Mawondo
• Chigongono
• Akakolo
• Zala
• Dzanja
• Zala zala
• Chiuno
• Cholumikizira cha nsagwada

Kodi arthrogryposis (AMC) imatenga nthawi yayitali bwanji?

Arthrogryposis ndi matenda omwe sangachiritsidwe kwathunthu . Komabe, pali mankhwala omwe angathandize kuti moyo wanu ukhale wabwino . Mankhwala olimbitsa thupi, makamaka, angakuthandizeni pa ntchito za tsiku ndi tsiku monga kuvala zovala ndi kumwa madzi.

Kodi mungadziwe bwanji ngati muli ndi arthrogryposis (AMC)?

Nthawi zina, vutoli limatha kuzindikirika mwana asanabadwe . Ngati ultrasound scan yachizolowezi panthawi ya mimba ikuwonetsa zolakwika m'miyendo ya mwana, zitha kuganiziridwa kuti mwina ndi arthrogryposis. Madokotala nthawi zambiri amazindikira mavuto awa a mafupa mu trimester yachiwiri ya mimba . Panthawiyo, dokotala angakutumizireni kuti mukalandire upangiri wa majini .

Mlangizi wanu wa majini adzakupatsani chidziwitso chokhudza matenda a majini omwe angakhudze mwana wanu. Adzakufunsani za mbiri ya thanzi la banja lanu ndikukulangizani mayeso aliwonse ofunikira a majini. Mwachitsanzo:

• `(Chorionic Villus Sampling - CVS)`
• `(Amniocentesis)`

Ngakhale mwana atabadwa, madokotala amatha kuzindikira vutoli mwa kuona zizindikiro zake ndikuchita mayeso osiyanasiyana . Mayesowa akuphatikizapo:

• Maphunziro a Kuyendetsa Mitsempha: Amayesa momwe mphamvu zamagetsi zimayendera mwachangu kudzera m'mitsempha.
• Electromyography (EMG): Imalemba momwe minofu imagwirira ntchito.
• `(Kufufuza Minofu)`: Kachidutswa kakang'ono ka minofu kamatengedwa ndikuwunikidwa.
• Kutsata Majini: Kuzindikira majini osinthika.
• Kuyezetsa magazi: Yang'anani zolakwika m'majini ndi ma chromosome.
• `(Comparative Genomic Hybridization (CGH) array)`: Imazindikira kusintha kwa ma chromosome.
• Microarray: Imasanthula majini zikwizikwi nthawi imodzi.
• Maphunziro a Exome: Kuzindikira kusintha kosiyanasiyana kwa majini.

Nthawi zina madokotala amadaliranso mayeso ojambulira zithunzi monga ultrasound ndi EMG.

Dokotala wanu akangozindikira chomwe chimayambitsa matenda anu a arthrogryposis , adzapanga dongosolo la chithandizo . Mutha kuthandiza kupanga dongosolo limenelo.

Kodi arthrogryposis (AMC) imachiritsidwa bwanji?

Ngakhale kuti palibe mankhwala enieni a arthrogryposis, chithandizo chingathandize kwambiri moyo wa mwana .

Kumbukirani kuti, ichi si vuto lomwe limalepheretsa mwana kukhala ndi moyo wabwino. Ndi chithandizo choyenera, zinthu zambiri zimatha kuchitika bwino.

Popeza zifukwa za arthrogryposis zimasiyana kwa aliyense, chithandizo chimasiyana malinga ndi munthu .

Mankhwala omwe amagwiritsidwa ntchito kwambiri pa arthrogryposis ndi awa:

• Ma cast amagwiritsidwa ntchito posuntha malo olimba . Izi zimasinthidwa pang'onopang'ono kuti malo olumikizira azikhala osinthasintha.
• Kuchiza thupi : Izi zimathandiza kuti mafupa aziyenda bwino komanso kupewa kufooka kwa minofu.
• Kusinthasintha kwa Mafupa : Izi zimaphatikizapo katswiri wosuntha mafupa pang'onopang'ono.
• Masewero Olimbitsa Thupi : Izi zimawonjezera kusinthasintha ndi kuyenda kwa mafupa.
• Opaleshoni . Opaleshoni ikhoza kuchitidwa kuti iwonjezere kuyenda kwa mafupa monga akakolo, chiuno, bondo, dzanja, kapena chigongono. Cholinga chachikulu apa ndikukonza ntchito ya mwana . Izi zimaphatikizapo kumasula mafupa ku minofu yomwe imaletsa kuyenda, kulola minofu kuti igwirizane ndi kuyenda. Komabe, opaleshoni imachitika nthawi zochepa chabe .

Akatswiri amalimbikitsa njira yogwiritsira ntchito njira zosiyanasiyana . Izi zikutanthauza kuti mwana wanu angafunike chithandizo chamankhwala choposa chimodzi. Zotsatira zabwino zimapezeka pamene gulu la madokotala ndi akatswiri a zachipatala agwira ntchito limodzi.

Kodi ndikufunika kuonana ndi akatswiri?

Inde, ndithudi. Pali akatswiri angapo omwe angathandize mwana wanu ndi arthrogryposis. Mwachitsanzo:

• Dokotala wa ana
• Dokotala wa mafupa (katswiri wa mafupa ndi mafupa)
• Dokotala wodziwa bwino matenda a mitsempha (Neurologist)
• Katswiri wa Zachibadwa Zachipatala
• Dokotala Wothandizira Anthu Odwala Matenda Opatsirana Matenda
• Katswiri Wothandiza Anthu Odwala Matenda a Thupi

Anthu onsewa amagwira ntchito limodzi kuti apange dongosolo labwino kwambiri la chithandizo cha mwana wanu.

Kodi pali mankhwala aliwonse omwe angachitike kunyumba?

Anthu ambiri omwe ali ndi arthrogryposis amafunikira chithandizo cha thupi kuyambira ali achinyamata . Akatswiri azachipatala adzakuphunzitsani masewera olimbitsa thupi omwe mungachite kunyumba . Ndikofunikira kwambiri kuchita izi molondola.

Kodi arthrogryposis (AMC) ingapewedwe?

Izi zili kutali ndi inu . Palibe chomwe mukanachita kuti muchepetse chiopsezo cha mwana wanu chotenga matenda a arthrogryposis. Chifukwa chake chonde musadziimbe mlandu .

Kodi tsogolo la munthu amene ali ndi matenda a arthrogryposis (AMC) ndi lotani?

Chiyembekezo cha nthawi yayitali cha anthu omwe ali ndi AMC chimadalira zinthu zingapo:

• Kuopsa kwa arthrogryposis.
• Chifukwa chachikulu cha arthrogryposis.
• Momwe thupi lanu kapena la mwana wanu limayankhira chithandizo .

Koma nkhani yabwino ndi yakuti anthu ambiri omwe ali ndi arthrogryposis amakhala ndi moyo wodziyimira pawokha . Chithandizo chingathandize kuti azitha kuyenda bwino kwambiri moti akhoza kukhala ndi moyo wabwinobwino, monga momwe anthu opanda arthrogryposis amachitira.

Kodi arthrogryposis imakula pakapita nthawi?

Arthrogryposis si vuto lomwe limayamba pang'onopang'ono . Izi zikutanthauza kuti kuuma kwa mafupa sikumakula pakapita nthawi. Komabe, vuto lomwe limayambitsa matendawa nthawi zina limakhala lalikulu . Chifukwa chake, madokotala akatsimikizira kuti mwana wanu ali ndi arthrogryposis, ndi bwino kudziwa zomwe zimayambitsa.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala okhudza arthrogryposis?

Kufunsa dokotala mafunso kungakuthandizeni kumvetsetsa bwino matenda a arthrogryposis. Ganizirani kufunsa dokotala mafunso awa okhudza matenda a mwana wanu:

• Kodi mwana wanga ali ndi mtundu wanji wa arthrogryposis?
• Kodi mwana wanga ayenera kuvala pulasitala kwa nthawi yayitali bwanji?
• Kodi chithandizo chabwino kwambiri kwa mwana wanga ndi chiti?
• Ndi akatswiri ati omwe mwana wanga ayenera kuwaona?
• Kodi tiyamba liti kuchita masewera olimbitsa thupi?
• Kodi pali mankhwala aliwonse omwe mwana wanga ayenera kumwa?
• Kodi ndingathandize bwanji mwana wanga bwino?

Anthu omwe ali ndi matenda a arthrogryposis amabadwa ndi mafupa olimba kapena osayenda bwino. Angakhale ndi vuto ndi ntchito za tsiku ndi tsiku, monga kuyenda kapena kugwira chikho. Anthu ambiri amafunika chithandizo chamankhwala komanso nthawi zina opaleshoni kuti apititse patsogolo moyo wawo.

Chinthu chomaliza chomwe kholo limafuna kumva ndi chakuti pali vuto ndi mwana wawo wosabadwa kapena wobadwa kumene. Chonde musadziimbe mlandu . Palibe chomwe mukanachita mosiyana. Ngati mukufuna thandizo pothana ndi vutoli, lankhulani ndi dokotala wanu za uphungu ndi magulu othandizira. Simuli nokha . Pali mabanja ena omwe akukumana ndi mavuto ofanana.

Pomaliza, kumbukirani izi (Uthenga Wopita Nawo Kunyumba)

Arthrogryposis ndi matenda omwe mwana amabadwa ndi chiwalo chimodzi kapena zingapo zozizira ndipo sangathe kuyenda bwino. Zingamveke zoopsa, koma kumbukirani kuti ndi chithandizo choyenera komanso chisamaliro chachikondi, ana awa akhoza kukhala ndi moyo wabwino kwambiri .

Ngakhale kuti chifukwa chenicheni sichipezeka nthawi zonse, majini ndi matenda enaake omwe amachitika panthawi ya mimba angathandize . Ndikofunikira kwambiri kuzindikira msanga ndikuyamba chithandizo monga physiotherapy, casting ngati pakufunika, komanso opaleshoni yochepa.

Kumbukirani kuti ichi si chinthu chomwe chingapewedwe, choncho monga makolo, musataye mtima . Gwirani ntchito ndi gulu lanu lachipatala ndipo perekani mwana wanu zomwe akufunikira. Simuli nokha, pali anthu ambiri omwe angathandize.

Ngakhale mwana amene ali ndi matenda a arthrogryposis akhoza kukhala ndi tsogolo labwino kwambiri chifukwa cha kuleza mtima, chikondi, ndi uphungu woyenera wa zachipatala .

Arthrogryposis , kuuma kwa mafupa, vuto lobadwa nalo, thanzi la mwana, matenda a majini, chithandizo cha thupi, kuuma kwa mafupa ambiri