Ramba Uchizvipira Nokushandisa Zivo, Kutsigira, uye Kuzvitarisira
Muscular dystrophy chirwere chemusimba kuderera uye kurashikirwa kunowedzera kupfuura kwenguva. Kunyange zvazvo pasina mushonga, kune remishonga yekubatsira kubata chirwere ichi-uye apa ndiko kushandiswa kwekutarisira kunoitika.
Pasinei nokuti uri mubereki kana kuti waunoda, kutarisira mumwe munhu ane musimba dystrophy kunoda simba rakawanda mumuviri, mupfungwa, uye mupfungwa. Asi iwe paunotanga (kana kuti uchienderera mberi) rwendo rwako rwekutarisira, unoziva kuti hausi wega.
Vamwe vari parwendo urwu zvakare, uye vamwe vachida kuenda newe.
Izvozvo zvakati, pano pane matanho matatu ekufungisisa apo iwe unofamba nenzira iyi yakasiyana.
Tidbit # 1: Gamuchira Zivo
Zivo ye muscular dystrophy ichakupa humwe hutano pamusoro pehutano hwako hunooma uye hunooma. Iwe uchakwanisa kufanotaura uye kupindura nyore nyore kumatambudziko emudiwa wako.
Nezvo, apa pane zvishoma zvinyorwa zvinokosha kuti pfungwa dzako dzive nehanya.
Iko Kune Mhando dzakasiyana dzeMuscular Dystrophy
Mu muscular dystrophy, rimwe kana mazana emagetsi anodzora masimba anowanzogadziriswa (iyo DNA yakafanana inoshandurwa). Sezvo majee akasiyana-siyana anogona kugadziriswa, kune marudzi akasiyana emasystrophies.
Somuenzaniso, muDuchenne muscular dystrophy (iyo inowanzozivikanwa), dystrophin gene inoshandurwa. Zvinosuruvarisa, kune mamwe masystrophies muscular, zvakananga majini kana mazamu akabatwa hazvina kuonekwa.
Muscular Dystrophy Inhaka
Izwi rinotenderera rinokonzera muscular dystrophy rinobva kune mumwe kana vabereki vose kumwana. Nzira chaiyo yemhaka (iyo geni inopfuudzwa kumwana) inobva pane nzvimbo yejeni. Somuenzaniso, mutated mutated inokonzera Duchenne muscular dystrophy iri pane imwe ye X chromosomes inotorwa naamai.
Iyi nzira yenhaka inonzi X-yakabatanidzwa zvakare.
Muscular Dystrophy Inokonzera Musero Kuderera
Chiratidzo chikuru chemuscular dystophy musimba utera. Mamwe mavara e-muscular dystrophies anokukonzera zvimwe zviratidzo, sematambudziko emwoyo kana matambudziko ekuziva.
Kuoma kwezviratidzo kunopesana, zvinoreva kuti vamwe vanhu vanokudziridza hurema hwakakomba, zvinoda chikwama chavasingadi kuti vafambire uye vatsigiri rekuputira kuti vararame, asi vamwe vane urema hushoma chete.
Pakupedzisira, nguva yekutanga kwehutachiona husina simba (kana kutanga kwemuscular dystrophy) yakasiyana-imwe inotanga pakuzvarwa apo vamwe vanotanga muhucheche, vachiri kuyaruka, kana kunyange vakura.
Tidbit # 2: Gamuchira rubatsiro
Kana iwe uri kutarisira mwana kana munhu mukuru ane muscular dystrophy, iva nechokwadi chekushandira rubatsiro.
Mhuri uye Shamwari
Munhu wese anoda chidimbu, pasinei nokuti muri mubereki unochengetera mwana ane muscular dystrophy kana munhu anodiwa achitarisira munhu mukuru. Ichokwadi, mhuri, shamwari, uye kunyange vanozvipira mukati memunharaunda yenyu, kazhinji vanoda kubatsira asi havazivi kuti sei.
Iva akajeka, funga purogiramu, uye urege kunzwa uine mhosva. Munhu wose anoda nguva yekuzorora uye kuzviriritira.
Kunze Rubatsiro
Funga kuwana kunze (kana kurarama-mu) mubatsiri wega wega uyo anogona kubatsira pakushambidza, kuenda kuimba yekugezera, kupinda nekubuda pamubhedha, kupfeka, nekubika.
Iwe unogonawo kufunga nezvekubhadhara mukoti (kana kuti kuronga vazvipiri vanozvipira) usiku kuti vatarise mwana wako kana kuti waunoda, saka iwe unogona kuwana kurara kusina kunetseka.
Kazhinji, vanhu vanoona kuti panze rubatsiro runokurudzira rusununguko rwemativi maviri-mwana wako kana mudikanwi angangodaro anokoshesa shanduko iyi.
Chiremba
Zvichienderana nemhando ye muscular dystrophy mwana wako kana vadikanwi vane, kuchava nechido chekuchengetwa kwehutano, kakawanda.
Semuenzaniso, mwana wako kana waunoda angave ane chirongwa chinogara chichigadziriswa , kana kuchipatara kana mumba mako.
Zvimwe zvinogona kugadziriswa kwehutano zvinogona kusanganisira:
- Chiremba anoshanyira (somuenzaniso, vanachiremba vevana, neuromuscular specialist, chirwere chezvechirwere chemapfupa , uye nyanzvi yemaroto)
- Kutarisana nemiedzo yakasiyana-siyana (somuenzaniso, mapapu ekuedza kuongorora, mapfupa emaminerari ekuyera masero, uye x-ray dzemutsana kuti uongorore chikoroose)
- Kubata zvirwere (somuenzaniso, gore negore rinopfurikidza uye zvirwere zvepneumococcal)
- Zvokudya zvinovaka muviri uye mazano ekutaurirana mazano
- Mushandi wezvemagariro anoshanyira kusvitsa zvigadziridzo zvinotsigira sezvikwama zvevhiri, ventilator, uye mapikisi
Panguva yekugadza, svinura kukurukura zvinetso nekubvunza mibvunzo. Kuburikidza neboka remudiwa wezvechiremba kuti akutsigire uye kutungamirirwa kunotarisirwa. Pakupedzisira, kukurukurirana kusununguka pakati pemapoka ose kuchaita kuti kutarisira uye hupenyu huve nani.
Muscular Dystrophy Association
Sangano reMuscular Dystrophy (MDA) sangano rinoshamisa rinopa huwandu hwezvigadziro kune vatarisi, kusanganisira nyaya dzepaIndaneti nemapoka ehurukuro, mapurogiramu ekutsigira, uye kurongwa kunoridzirwa kuverenga.
Mukuwedzera kune zvakakosha, vanopa mapurogiramu akaita semusangano wegore negore reMDC, apo vana vane musyria dystrophy vanogona kunakidzwa kwevhiki yekuseka. Iyi mukana wakasununguka (unobhadharwa nevatsigiri veMDC) unopawo vabereki (nevamwe vatarisi) zvakakosha zvakakosha.
Tidbit # 3: Kuchengetera Iwe pachako
Kuzvitarisira kwakakosha zvikuru semutarisiri. Kutanga, zvakakosha kutarisira muviri wako. Izvi zvinoreva kuchengetedza muviri, kudya chikafu, nokuona chiremba wako achiongorora nguva dzose.
Kana iwe uchinetseka kuwana nguva yekurovedza muviri kana kuti wakaneta pamagumo ezuva, edza kuisa maitiro ekuita muupenyu hwako hwezuva nezuva. Semuenzaniso, unogona kuedza kushandiswa kweterevhizheni kumba kana kuenda kwemazuva ose huchifamba mumasikirwo emunhu kana kuti munharaunda yomunharaunda yomunharaunda nemudiwa wako, kana zvichibvira.
Mukuwedzera pakupinda kune hutano hwako hwepanyama, iva nechokwadi chekutarisira hupenyu hwako hukama. Kuora mwoyo kunowanzoonekwa pakati pevanotarisira, saka tarisa zviratidzo zvekuora mwoyo sekuramba uchidzikama, zvinetso zvekurara, kurasikirwa kana kuwana pfuma yekuda, kana manzwiro ekusava netariro uye mhosva. Kana iwe unonetseka nezvekuora mwoyo, ona chiremba wako kana unyanzvi hwehutano hwepfungwa.
Kuti urwise kushungurudzika uye chido chokuva mutarisiri, uyewo kugovera rutivi rwunobatsira, funga kujoka neboka rekutsigira kune vakwegura. Iwe unogonawo kufunga nezvekuita mupfungwa-mishonga yemuviri inogona kukurudzira kuzvidzora uye kusuruvara kwekunetseka, kufanana ne yoga kana kufunga kwefungwa.
Shoko Rinobva
Kutarisira mudiwa ne muscular dystrophy hazvisi nyore, asi vazhinji vanowana sirivha yokuvhara, kana iri kuwana kuwana kwakadzika, hutano hwehupenyu, kuwedzerwa mune zvemweya, kana kungoona kunaka mune zviduku zvishoma zveupenyu hwezuva nezuva.
Ramba wakasimba uye uzvipira rwendo rwako rwekuchengetedza, yeuka kuva nehanya zvako pachako, uye kushanda kune vamwe kuti ubatsire.
> Sources:
> Darras BT. (2017). Zviratidzo zvechipatara uye kuongororwa kweDuchenne uye Becker muscular dystrophy. Patterson MC, Firth HV, eds. Kusvika pari zvino. Waltham, MA: UpToDate Inc.
> Landfeldt E et al. Kuchengetedza mutoro wekutarisira muDuchenne muscular dystophy. J Neurol . 2016 May; 263 (5): 906-15.
> Muscular Dystrophy Association. (nd). Vagadziri.
> National Institute of Neurological Disorders uye Stroke. (2018). Muscular Dystrophy Information Page.