Kodi mwana wanu ali ndi vuto loletsa mawonekedwe a nkhope? Tiyeni tiphunzire za Moebius Syndrome!

Kodi mwaonapo kuti makanda ena amavutika kumwetulira, kupanga nkhope zokongola, kapena kukweza nsidze zawo akadabwa? Kapena mwina amavutika kuyamwa kapena kusuntha maso awo? Lero tikambirana za vuto losowa lomwe lingakhale chifukwa cha zinthuzi. Limatchedwa Moebius Syndrome . Musadandaule, izi sizingakhale zomwe anthu ambiri amazidziwa bwino. Tiyeni tikambirane mwatsatanetsatane.

Kodi Moebius Syndrome ndi chiyani?

Mwachidule, matenda a Moebius ndi matenda amitsempha omwe amapezeka mwana akangobadwa . Amayamba mwana akangobadwa, pamene mitsempha ina yofunika kwambiri m'chigaza chake (mitsempha ya m'mutu) sikukula bwino. Mitsempha imeneyi imalamulira nkhope yathu ndipo imachita zinthu zambiri, monga kusuntha maso athu. Choncho vutoli limachitika pamene pali kufooka m'mitsempha imeneyi.

Vutoli ndi losowa kwambiri . Limakhudza makanda pafupifupi 20 mwa 200,000. Ngakhale pakadali pano palibe mankhwala ake, pali maopaleshoni ndi mankhwala ena omwe angathandize kukonza mawonekedwe a nkhope, kukonza mavuto a maso, komanso kuthandizira kusintha kwina kwa thupi komwe kumachitika chifukwa cha vutoli. Nthawi zambiri, anthu omwe ali ndi vutoli amatha kukhala moyo wabwinobwino.

Kodi zizindikiro za matenda a Moebius ndi ziti?

Matenda a Moebius angayambitse zizindikiro zosiyanasiyana. Koma chizindikiro chachikulu komanso chofala kwambiri ndi kufooka kwa minofu ya nkhope . Izi zingakhudze zinthu monga kulamulira mawonekedwe a nkhope, kusuntha maso, kuyamwa ndi kumeza, ndi zina zambiri.

Ana obadwa ndi vutoli amavutika kuyamwitsa . Sangathe kuyamwa bwino kuchokera m'mawere kapena m'botolo. Angakhale ndi vuto kumwetulira, kukwinya nkhope, kapena kukweza nsidze zawo. Nthawi zina, sangathe kutseka maso awo bwino ngakhale akugona.

Zizindikiro zina ndi matenda zingaphatikizepo:

• Kukhala ndi mkamwa wosweka .
• Maso opindika (strabismus) .
• Zofooka zina m'manja ndi m'mapazi (monga chigongono cha phazi , zala zokhala ndi ukonde, zala zosowa).
• Kuwonetsa kuchedwa kwa chitukuko .
• Kutaya kumva .
• Kusowa kwa minofu (Hypotonia) .
• Kulephera kusuntha maso kuchokera mbali imodzi kupita mbali ina.
• Nsagwada yaying'ono (Micrognathia) .
• Matenda a Poland (momwe minofu imakula pang'ono mbali imodzi ya chifuwa).

Ana ena omwe ali ndi matenda a Moebius syndrome angakhalenso ndi vuto la autism spectrum disorder . Ana akamakula, amathanso kukumana ndi mavuto monga kuphulika kwa mano kapena kusowa mano.

Kodi mavuto a Moebius syndrome ndi ati?

Anthu omwe ali ndi vutoli angakanidwe ndi anthu chifukwa amaoneka mosiyana pang'ono ndipo amachita zinthu mosiyana pang'ono akamalankhula ndi ena komanso akamamwetulira.

Taganizirani izi, nkhope zathu nthawi zambiri zimavumbula momwe tikumvera. Ngati wina akumwetulirani, kodi nafenso timamwetulira? Sitichita izi mwadala. Ndicho chimene timachitcha 'kutsanzira nkhope'. Umu ndi momwe timamvetsetsera malingaliro a anthu ena ndi kulumikizana nawo.

Popeza anthu omwe ali ndi matenda a Moebius amavutika kutsanzira nkhope za anthu ena mwanjira imeneyi, akhoza kukhala ndi vuto lozindikira ndikumvetsetsa momwe anthu ena akumvera . Nthawi zina angawoneke ngati alibe chidwi ndi momwe anthu ena akumvera.

Komanso, chifukwa vutoli limakhudza momwe anthu amalankhulira ndi kuonekera, anthu ena angaganize molakwika kuti ali ndi vuto la maganizo . Koma sizili choncho. Chifukwa cha lingaliro lolakwika ili, kafukufuku wina wasonyeza kuti anthuwa angasiye kuyesa kulumikizana ndi ena. Kumva kusungulumwa ndi kudzipatula kumeneku (ngakhale mwina mwakufuna kwawo) kungayambitsenso mavuto amisala monga kuvutika maganizo .

Kodi n’chiyani chimayambitsa matenda a Moebius?

Monga tanenera kale, matenda a Moebius amachitika pamene mitsempha ya m'khosi sikukula bwino pamene mwana akukula m'mimba. Mitsempha imeneyi ndi yomwe imanyamula zizindikiro pakati pa ubongo, mutu, khosi, ndi chifuwa.

Vutoli limakhudza makamaka mitsempha yachisanu ndi chimodzi ya cranial (yomwe imalamulira kayendetsedwe ka maso) ndi mitsempha yachisanu ndi chiwiri ya cranial (yomwe imalamulira mawonekedwe a nkhope). Nthawi zina imathanso kukhudza kukula kwa mitsempha ina, monga mitsempha yachisanu ndi chitatu (yomwe imalamulira kumva) ndi mitsempha yachisanu ndi chinayi (yomwe imalamulira kukoma ndi kumeza).

Akatswiri sakudziwabe chomwe chimayambitsa izi, koma pali zifukwa zingapo zomwe zingatheke:

• Kusintha kwa majini komwe kumakhudza kukula kwa mitsempha ya cranial panthawi ya mimba.
• Kuwonongeka kwa ubongo kumatha kuchitika panthawi ya mimba chifukwa cha kuchepa kwa mpweya kapena magazi kupita ku ubongo. Kafukufuku wina akusonyeza kuti kumwa mankhwala ena kapena mankhwala monga cocaine kungakhudze magazi kupita ku ubongo.

Kodi matenda a Moebius amawapeza bwanji?

Madokotala amazindikira vutoli makamaka poona zizindikiro zinazake :

• Mwana wanu akufufuzidwa ngati ali ndi vuto la nkhope kapena ziwalo zomwe zakhalapo kuyambira kubadwa ndipo sizikusintha pakapita nthawi .
• Akuyesera kuona ngati angathe kutembenuza maso awo kapena onse awiri kupita kunja kapena kumbali, koma sangathe kuwakweza kapena kuwatsitsa.

Madokotala angagwiritse ntchito mayeso ena kuti apeze matenda ena omwe angayambitse zizindikirozi.Palinso kuthekera kochita mayeso.

Kodi mankhwala a Moebius syndrome ndi ati?

Njira zochiritsira zimasiyana malinga ndi matenda a mwana wanu. Mankhwala ofala kwambiri ndi opaleshoni, physiotherapy, ndi chithandizo cha thanzi la maganizo .

Maopaleshoni

Ena mwa opaleshoni yochitidwa pochiza zizindikiro za matenda a Moebius ndi awa:

• Opaleshoni ya pakamwa podulidwa : Izi zimakonza pakamwa podulidwa mwa mwana.
• "Opaleshoni ya kumwetulira" (Opaleshoni yobwezeretsa nkhope / "opaleshoni ya kumwetulira") : Iyi ndi opaleshoni ya microsurgery . Minofu imatengedwa kuchokera ku gawo lina la thupi la mwana ndikuyikidwa kumaso. Kenako mwanayo amatha kumwetulira ndikuwonetsa nkhope zina pamlingo wina.
• Opaleshoni ya Strabismus : Izi zimaphatikizapo kumasula kapena kulimbitsa minofu ya maso kuti maso aziloza mbali imodzi ndikugwira ntchito limodzi.

Mankhwala ena

Makanda ndi ana omwe ali ndi vutoli angalandirenso chithandizo monga:

• Kuchiza thupi : Chithandizochi chimathandiza makanda ndi ana kukhala ndi luso loyendetsa thupi lomwe limakhudza magulu awo akuluakulu a minofu. Dokotala wothandiza ana kuyenda ndikukhala ndi mphamvu.
• Chithandizo cha kulankhula : Matenda a Moebius angakhudze luso la mwana kuyamwa ndi kumwa. Angakhudzenso luso la ana okulirapo lolankhula. Akatswiri a matenda a kulankhula amayang'ana kwambiri mavuto odyetsa ana aang'ono ndi mavuto olankhula ndi chilankhulo mwa ana okulirapo.
• Kugwira ndi kuponya (njira ya Ponsetti) : Iyi ndi njira yochizira mapazi opindika .
• Chithandizo cha ntchito : Akatswiriwa amathandiza ana kuchita ntchito za tsiku ndi tsiku, kukulitsa luso lawo la kuyenda bwino , luso lotha kuona, komanso luso lokonza zinthu pogwiritsa ntchito mphamvu.
• Thandizo pa vuto la kumva : Vutoli lingakhudzenso mitsempha ya m'khosi yomwe imalamulira kumva, kotero thandizo lofunikira limaperekedwa pa izi.
• Thandizo la thanzi la maganizo : Kafukufuku wasonyeza kuti anthu omwe ali ndi matenda a Moebius amatha kukhala ndi vuto la kuvutika maganizo, nkhawa, kapena kudzidalira. Chifukwa chake, thandizo limaperekedwanso kwa iwo.

Kodi ndiyenera kuyembekezera chiyani ngati mwana wanga ali ndi matenda a Moebius?

Ngati mwana wanu ali ndi vutoli, mungayembekezere zotsatirazi:

• Angapindule ndi mavuto akuthupi, makamaka zinthu monga "opaleshoni ya kumwetulira."
• Angafunike chithandizo cha thupi, chithandizo cha kulankhula, ndi chithandizo cha ntchito.
• Ngati pali kuchedwa kwa chitukuko,Ntchito zothandizira mwamsanga zingakhale zothandiza.
• Angafunike thandizo la thanzi la maganizo.

Kodi matenda a Moebius amakhudza moyo wa munthu?

Ayi, palibe zotsatira zoterozo. Anthu ambiri omwe ali ndi matenda a Moebius omwe amalandira chithandizo amakhala ndi moyo wabwinobwino .

Kodi matenda a Moebius angapewedwe?

Pakadali pano palibe njira yopewera izi. Asayansi akufufuzabe zomwe zimayambitsa komanso zinthu zomwe zingawopseze.

Kodi ndingasamalire bwanji mwana wanga komanso ine ndekha?

Matenda a Moebius angakhudze mwana wanu m'njira zambiri. Kumvetsetsa momwe vutoli limakhudzira mwana wanu kudzakuthandizani kukonzekera thandizo lomwe akufunikira panopa komanso mtsogolo. Komanso, pamene mukukonzekera, ganizirani zomwe mungachite kuti mudzithandize nokha. Kusamalira mwana yemwe ali ndi vutoli kungakhale kotopetsa kwambiri, kokhumudwitsa, komanso kosungulumwa . Choncho dzisamalireni nokha.

• Pezani magulu othandizira : Funsani dokotala wa mwana wanu za magulu othandizira matenda a Moebius. Kulankhula ndi ena omwe akukumana ndi mavuto omwewo kungathandize kuchepetsa kusungulumwa.
• Gawani malingaliro anu : Mungakhale ndi masiku (ndi usiku) omwe mumakhala ndi nkhawa, mkwiyo, kapena mantha. Mungakhale achisoni kapena kupsinjika maganizo. Ganizirani zolankhula ndi katswiri wa zamaganizo.
• Pumulani : Zingakhale zotopetsa kwambiri kusamalira mwana amene ali ndi vutoli. Anzanu ndi abale anu angakuthandizeni.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala wa mwana wanga?

Matenda a Moebius ndi matenda osowa kwambiri. Mwina simunamvepo za matendawa kale. Nazi mafunso ena omwe mungafunse dokotala wa mwana wanu:

• Ndi mitsempha iti ya cranial yomwe imakhudzidwa?
• Kodi pali akatswiri otani omwe angathandize ndi zizindikiro izi?
• Kodi ndiyenera kuganizira zomuchitira opaleshoni mwana wanga?
• Kodi abale anga ayenera kuyesedwa majini kapena kulandira uphungu?

Ngati mwana wanu ali ndi matenda a Moebius, mungatenge maola angapo oyamba, masiku, ndi milungu mutapezeka ndi matendawa mukuyesera kumvetsetsa momwe vutoli lingakhudzire moyo wa mwana wanu ndi wanu. Mungakwiye, kuda nkhawa, komanso kutopa. Gulu lachipatala la mwana wanu lidzamvetsa zomwe mungachite. Adzatenga nthawi kuti ayankhe mafunso anu okhudza zomwe angachite kuti athandize mwana wanu komanso zomwe mungachite kuti musamalire mwana wanu.

Pomaliza, kumbukirani izi.

Ngakhale kuti matenda a Moebius ndi ovuta, ndi uphungu woyenera wa zachipatala, chithandizo, ndi chisamaliro chachikondi, mutha kuthandiza mwana wanu kukhala ndi moyo wabwino. Kumbukirani, simuli nokha. Ndikofunikira kupeza thandizo lomwe mukufuna, komanso kudzisamalira nokha. Khalani olimba mtima komanso oganiza bwino.Ulendo uwu udzakhala gwero lalikulu la mphamvu kwa inu ndi mwana wanu.

Matenda a Moebius , Mitsempha ya Nkhope, Zilema Zobadwa Nazo, Thanzi la Ana, Matenda a Mitsempha, Maonekedwe a Nkhope