Muscular Dystrophy Chii? Zviratidzo, Zvinokonzera, Uye Kurapa

Muscular dystrophy boka rezvirwere zvemagene zvinosvitsa simba remhasuru zvishoma nezvishoma nekufamba kwenguva. Funga nezvazvo sekuti muviri wako une dambudziko rekugara uine simba uye chimiro chemafibrer emhasuru, izvo zvinogona kukanganisa maitiro ako ekufamba, kufema, uye kuita mabasa ezuva nezuva.

Kunyangwe izvi zvinganzwikwa zvakanyanya pakutanga, kunzwisisa muscular dystrophy kunogona kukubatsira iwe kana vanhu vaunoda kuti mufambire mberi nechirwere ichi nekuvimba kukuru. Kune marudzi akawanda akasiyana, imwe neimwe ine nguva yayo uye hunhu, uye kufambira mberi kwezvekurapa kuri kuramba kuchivandudza hupenyu hwevanhu vanorarama neaya mamiriro.

Muscular dystrophy chii?

Muscular dystrophy inoreva zvirwere zvinopfuura makumi matatu zvinowanikwa kubva kumagwenya zvinokonzera kushaya simba kwemhasuru uye kurasikirwa nehuremu hwemhasuru. Mhasuru dzako dzinowedzera kusakwanisa kuzvigadzirisa, zvichikonzera kuwedzera kuoma nekufamba kwenguva.

Shoko rokuti "dystrophy" rinoreva chaizvoizvo "kushaya zvokudya zvakanaka," asi pano, rinotsanangura kuti sei masero emhasuru ako asingakwanisi kuchengetedza chimiro chawo chakajairika. Rudzi rwega rwega rwe muscular dystrophy runokonzerwa nekuchinja kwemagene akasiyana anokanganisa mapuroteni chaiwo emhasuru dzako dzinoshanda kuti dzive dzakasimba.

Mamwe maitiro anooneka muhudiki hwemwana, nepo mamwe asingaratidzi zviratidzo kusvika pakuva mukuru. Kufambira mberi kunogona kukurumidza mune dzimwe nguva kana kunonoka zvikuru mune dzimwe, zvichienderana nerudzi rwuripo.

Marudzi emuscular dystrophy ndeapi?

Kune marudzi akati wandei makuru emuscular dystrophy, imwe neimwe inokanganisa mapoka akasiyana emhasuru uye ichitevera maitiro akasiyana ekufambira mberi. Kunzwisisa rudzi rwako kunobatsira vanachiremba kugadzira chirongwa chekurapa chakakodzera kwauri.

Duchenne muscular dystrophy (DMD) ndiyo yakajairika uye yakakomba muvana. Inonyanya kukanganisa vakomana uye kazhinji inooneka pakati pemakore 2-6, ichikonzeresa kushaya simba kunowanzo tanga mumakumbo nemu pelvis.

Becker muscular dystrophy yakafanana neDuchenne asi inofambira mberi zvishoma nezvishoma. Zviratidzo kazhinji zvinotanga mumakore echidiki kana makore makumi maviri ekutanga, uye vanhu vazhinji vanoramba vakwanisa kufamba zvakanaka kusvika pakuva vakuru.

Myotonic dystrophy ndiyo yakajairika muvakuru. Kunze kwekukanganisa kwemhasuru, inogona kukonzera kuoma kwemhasuru (myotonia) uko mhasuru dzako dzine dambudziko rekudzorera mushure mekuita basa.

Facioscapulohumeral dystrophy (FSHD) kazhinji inotanga pachiso chako, mapendekete, uye maoko epamusoro. Kazhinji imwe yemarudzi akapfava uye inogona kutanga pane chero nguva kubva paudiki kusvika pakuva mukuru.

Limb-girdle muscular dystrophy inokanganisa mhasuru dziri kumativi emahudyu nemapendekete kutanga. Kune marudzi mazhinji ari mukati mechikamu ichi, imwe neimwe ine zvinokonzera magene akasiyana nemaitiro ekufambira mberi.

Zviratidzo zvemuscular dystrophy ndeapi?

Zviratidzo zvemuscular dystrophy zvinogona kusiyana zvakanyanya zvichienderana nerudzi rwaunaro, asi zvose zvinosanganisira kushaya simba kwemhasuru. Ungacherechedza aya kuchinja achifambira mberi zvishoma nezvishoma kwemwedzi kana makore.

Heano zviratidzo zvakajairika zvekutarisa:

• Kuomerwa kufamba, kumhanya, kana kukwira matanho
• Kuwa kazhinji kana kuomerwa kumuka pasi
• Kurwadziwa kwemhasuru, kuoma, kana kuchema
• Kushaya simba mumapoka akasiyana emhasuru (chiso, mapendekete, kana makumbo)
• Mhasuru dzemakumbo dzakakura asi dzakasimba kupfuura sezvazvinoita
• Kuenderera mberi kwekuvandudzika kwemota muvana
• Kuomerwa kukwidza maoko pamusoro pemusoro kana kutakura zvinhu
• Kuchinja mumaitiro ekufamba kana kufamba

Mamwe marudzi anokonzerawo zviratidzo kunze kwemhasuru pachayo. Ungave uine matambudziko emoyo, kuoma kufema, kana matambudziko ekudzidza, zvichienderana nerudzi rwe muscular dystrophy raunaro.

Kufambira mberi kwezviratidzo kazhinji kunononoka, zvinoreva kuti ungagona kugadzirisa kuchinja pasina kuzviziva pakarepo. Ndosaka zvakakosha kucherechedza maitiro ekukura kuoma nebasa rawaimboita nyore nyore.

Chii chinokonzera muscular dystrophy?

Muscular dystrophy inokonzerwa nekuchinja (mutations) mumagene ane basa rekugadzira mapuroteni emhasuru dzako dzinoshanda kuti dzive dzakasimba. Aya kuchinja kwemagene anowanikwa kubva kumagwenya, zvinoreva kuti anopfuudzwa kubva kuvabereki kuenda kuvana.

Iyo inonyanya kukosha mapuroteni inokanganiswa inonzi dystrophin, iyo inoita se shock absorber yemafibrer emhasuru ako. Kana dystrophin isingawanikwi kana isingashande zvakanaka, masero emhasuru ako anokuvadzwa nguva dzose paanoita basa uye pakupedzisira anofa.

Marudzi akasiyana emuscular dystrophy anosanganisira mutations mumagene akasiyana. Semuenzaniso, Duchenne neBecker dystrophy zvose zvinokanganisa dystrophin gene, nepo mamwe marudzi anosanganisira magene anoita mapuroteni akasiyana emhasuru.

Maitiro ekupfuudzwa anochinja nerudzi. Mamwe maitiro ane X-linked, zvinoreva kuti anokanganisa varume zvikuru nekuti gene iri pane X chromosome. Mamwe anotevera autosomal dominant kana recessive patterns, achikanganisa varume nevakadzi zvakafanana.

Zvakakosha kunzwisisa kuti muscular dystrophy haina kukonzerwa nechinhu chawakaita kana usina kuita. Aya ndiwo mamiriro emagene anoitika nekuda kwekuchinja kweDNA kwakawanikwa, kwete zvinhu zvehupenyu kana zvinhu zvakapoteredza.

Rini unofanira kuona chiremba nekuda kwe muscular dystrophy?

Unofanira kubvunza chiremba kana ukaona kushaya simba kwemhasuru kana mwana wako asingasviki zvinangwa zvekuvandudzika. Kuongororwa pakutanga kunogona kutungamira pakugadzirisa kwakanaka nekutsigira kwauri kana mhuri yako.

Rongedza musangano kana ukaona kuwa kazhinji, kuoma kukwira matanho, kana kuomerwa kutakura zvinhu zvisina kuoma kare. Aya kuchinja mukukwanisa kwako kwemuviri kunoda kutarisirwa nachiremba, kunyanya kana zvichinyanya kuipa.

Kune vana, tarisa kuenderera mberi kwekutambudzika kufamba, kuomerwa kumhanya kana kudonha, kana kuomerwa kufambirana nevamwe panguva yemitambo yemuviri. Vakomana vane mhasuru dzemakumbo dzakakura pamwe nekukanganisa vanofanira kuongororwa nekukurumidza.

Usamirira kana uri kuona matambudziko ekufemba, kurova kwemoyo, kana kuneta kwakanyanya pamwe nekukanganisa kwemhasuru. Izvi zvinogona kuratidza kuti mamiriro acho ari kukanganisa mamwe masisitimu emuviri anoda kutarisirwa nekukurumidza.

Nhoroondo yemhuri inokoshawo. Kana uine hama dzine muscular dystrophy uye uri kuronga kuva nevana, genetic counseling inogona kupa ruzivo rwakakosha nezve njodzi nezvinhu zvekuyedza.

Zvinhu zvinokonzera njodzi dze muscular dystrophy ndeapi?

Chinhu chikuru chinokonzera njodzi dze muscular dystrophy ndechekuva nenhoroondo yemhuri yemiriro iyi. Sezvo aya ari matambudziko emagene, njodzi yako inonyanya kuenderana nekuti wakawana kuchinja kwemagene kunokonzera.

Bonde rako rinogona kukanganisa njodzi dzemarudzi akati. Maitiro eX-linked akadai seDuchenne neBecker muscular dystrophy anokanganisa varume zvikuru nekuti vane X chromosome imwe chete. Vakadzi vanogona kuva vatakuri uye vangave nezviratidzo zvishoma.

Zera rekutanga rinotanga rinochinja nerudzi, asi mamwe maitiro anowanzoonekwa panguva dzakasiyana dzehupenyu. Duchenne kazhinji inoratidza zviratidzo muhudiki hwemwana, nepo mamwe marudzi akadai se myotonic dystrophy kazhinji anobuda pakuva mukuru.

Mhuri yemunhu inogona kuita basa mune mamwe marudzi mashoma. Mamwe mutations emagene anowanzoitika mune dzimwe nharaunda, kunyangwe muscular dystrophy inogona kukanganisa vanhu vechero rudzi.

Kuva nerudzi rumwe rwe muscular dystrophy hakuwedzeri njodzi yako yekuwana mamwe marudzi, sezvo imwe neimwe ine kuchinja kwemagene akasiyana. Zvisinei, nhengo dzemhuri dzinogona kugoverana njodzi dzakafanana dzemagene.

Matambudziko anogona kuitika emuscular dystrophy ndeapi?

Muscular dystrophy inogona kutungamira kumatambudziko akawanda sezvo mamiriro acho achifambira mberi, asi mazhinji eaya anogona kugadziriswa zvakanaka nekutarisirwa kwakanaka kwezvokurapa. Kunzwisisa matambudziko anogona kuitika kunokubatsira iwe nechikwata chako chehutano kuti murambe muri pamberi pematambudziko.

Heano matambudziko makuru ekunzwisisa:

• Kunetseka kufema sezvo mhasuru dzekufema dzichisimba
• Matambudziko emoyo, kusanganisira cardiomyopathy uye kusagadzikana kwemoyo
• Kuomarara kwezvibatanidzwa uko mhasuru nematendon anokomba
• Scoliosis (kukombama kwemusana) kubva pakusagadzikana kwemhasuru
• Kudzvinyirira kufamba kunoda zvinhu zvinobatsira
• Matambudziko ekuruma anogona kukanganisa zvokudya
• Kuwedzera njodzi yekuputsika kubva pakuwa nekushaya simba kwemashizha

Matambudziko ekufemba ari pakati pezvinhu zvinotyisa zvikuru. Sezvo mhasuru dzino kubatsira iwe kufema dzichisimba, ungada rutsigiro rwekufema, kunyanya panguva yekurara kana zvirwere zvekufema.

Mashoko akanaka ndeakuti matambudziko mazhinji anogona kudzivirirwa kana kugadziriswa nekutarisirwa kwakakosha. Kuongororwa nguva dzose, physiotherapy, uye zviyero zvakakodzera zvinogona kuvandudza hupenyu hwako zvikuru uye kubatsira kudzivirira mamwe eaya matambudziko kuti asabude.

Muscular dystrophy inoziiwa sei?

Kuziva muscular dystrophy kazhinji kunosanganisira nhanho dzakati wandei, kutanga nehurukuro yakadzama yezviratidzo zvako nenhoroondo yemhuri. Chiremba wako achida kunzwisisa kuti wakazviona rini kushaya simba uye kuti kwakafambira mberi sei nekufamba kwenguva.

Kuongororwa kwemuviri kunotevera, uko chiremba wako achaedza simba remhasuru dzako, reflexes, uye kugadzikana. Vachatsvaga maitiro chaiwo ekushaya simba anogona kubatsira kuziva kuti rudzi rwei muscular dystrophy rwunogona kubatanidzwa.

Kuongororwa kweropa kunogona kuratidza mazinga akakwirira e enzyme inonzi creatine kinase (CK), iyo inobuda mumasero emhasuru akakuvadzwa. Kunyangwe mazinga eCK akakwirira achiratidza kukuvara kwemhasuru, haatauri chikonzero chaicho.

Genetic testing kazhinji ndiyo chishandiso chakakosha chekuongorora. Sampuli iri nyore yeropa kana mate inogona kuziva mutations chaiwo emagene anokonzera marudzi akasiyana emuscular dystrophy.

Chiremba wako anogonawo kukurudzira electromyography (EMG) bvunzo, iyo inoyerera simba remagetsi mumhasuru dzako, kana dzimwe nguva biopsy yemhasuru kuongorora tishu pasi pemikroskopu. Aya ma bvunzo anobatsira kusimbisa kuongororwa uye kubvisa mamwe mamiriro.

Kurapa kwe muscular dystrophy chii?

Kunyangwe pasina mushonga we muscular dystrophy ikozvino, kurapa kunogona kunonoka kufambira mberi, kugadzirisa zviratidzo, uye kuvandudza hupenyu hwako. Maitiro acho anotarisa pakuchengetedza basa uye kudzivirira matambudziko kwenguva yakareba sezvinobvira.

Mishonga ine basa rinokosha mukurapa. Corticosteroids akadai se prednisone anogona kubatsira kunonoka kuora kwemhasuru mune dzimwe mhando, kunyanya Duchenne muscular dystrophy. Mishonga mitsva yakadai se eteplirsen inogona kubatsira marudzi akasiyana emagene.

Physiotherapy inokosha pakuchengetedza simba remhasuru nekugadzikana. Therapist yako ichagadzira maekisesaizi anochengeta majoini ako achifamba uye anokubatsira kuchengetedza kuzvimiririra mumabasa ezuva nezuva.

Occupational therapy inokubatsira kugadzirisa nharaunda yako uye kudzidza nzira itsva dzekuita mabasa sezvo unyanzvi hwako huchichinja. Izvi zvinogona kusanganisira kushandisa zvinhu zvinobatsira kana kuchinja imba yako kuti ive nyore.

Kutsigirwa kwekufema kunova kukosha sezvo mhasuru dzekufema dzichisimba. Izvi zvinogona kusanganisira nzira dzekuchenesa mapapu ako kusvika pakufema kwemagetsi panguva yekurara kana nguva dzose sezvinodiwa.

Kuongororwa kwemoyo nguva dzose nekurapa kunobatsira kugadzirisa matambudziko emoyo. Vamwe vanhu vangada mishonga yematambudziko emoyo kana kutsigira basa remoyo.

Maitiro ekugadzirisa muscular dystrophy kumba?

Kugadzirisa muscular dystrophy kumba kunosanganisira kugadzira nharaunda inotsigira inokubatsira kuchengetedza kuzvimiririra uchigara wakachengeteka. Kuchinja duku uye maitiro akasimba kunogona kuita musiyano mukuru muhupenyu hwako hwezuva nezuva.

Tarisisa pane maekisesaizi akapfava, nguva dzose sezvakakurudzirwa nechikwata chako chehutano. Kushambira nekutandadzira kazhinji sarudzo dzakanaka nekuti dzinodzivirira kugadzikana pasina kuisa kumanikidza kwakanyanya pamhasuru dzakasimba.

Kuchinja kumba kunogona kuvandudza kuchengetedza nekufambisa. Funga nezvekugadzira mabara ekubata, marampa, uye chiedza chakakwana. Kuchengeta zvinhu zvinoshandiswa kazhinji zviri nyore kusvika kunoderedza kumanikidza nenjodzi yekuwa.

Zvokudya zvine basa rinotsigira muhutano hwako hwese. Kuchengetedza uremu hwakanaka kunoderedza kumanikidza pamhasuru dzako ne majoini, nepo zvokudya zvakakwana zveprotein zvinotsigira hutano hwemhasuru.

Nzira dzekuchengetedza simba dzino kubatsira iwe kuita zvakawanda nesimba shoma. Rongedza mabasa anoda simba panguva yaunonzwa wakasimba, uye usambofunga kushandisa zvinhu zvinobatsira kana zvichi kubatsira.

Rambai makabatana nechikwata chenyu chekutsigira. Mhuri, shamwari, nemagrupo ekutsigira zvinopa rutsigiro rwepfungwa nerubatsiro rwakakosha izvo zvinogona kuvandudza hupenyu hwako zvikuru.

Ungagadzirira sei musangano wako nachiremba?

Kugadzirira musangano wako kunobatsira kuve nechokwadi chekuti unowana ruzivo rwakakosha nekutsigira kubva kuchikwata chako chehutano. Kuronga zvishoma usati watanga kunogona kuita kuti shanyo ive yakabereka zvikuru.

Nyora zviratidzo zvako uye kuti wakazviona rini kutanga. Sanganisira ruzivo nezve mabasa api akaoma uye kuti kuchinja kwakakurumidza sei kwakaitika.

Unganidza nhoroondo yemhuri yako yezvokurapa, kunyanya hama dzine matambudziko emhasuru kana mamiriro emagene. Ruzivo urwu runogona kuva rukuru pakuzivisa nekurairwa kwemagene.

Gadzira rondedzero yemishonga yese, zvinowedzerwa, nemavhitamini auri kutora. Sanganisira madhoshi uye kuti wakatora imwe neimwe kwenguva yakareba sei.

Gadzira mibvunzo nezve mamiriro ako, sarudzo dzekurapa, uye zvaunofanira kutarisira kuenda mberi. Usanetseka nezve kubvunza mibvunzo yakawanda - chikwata chako chehutano chinoda kukubatsira kunzwisisa mamiriro ako.

Funga nezvekutora nhengo yemhuri kana shamwari kumusangano. Vanogona kukubatsira kuyeuka ruzivo rwakakurukurwa uye kupa rutsigiro rwepfungwa panguva inogona kuva hurukuro yakaoma.

Chii chinonyanya kukosha nezve muscular dystrophy?

Muscular dystrophy inomiririra boka rezvirwere zvemagene zvinokonzera kushaya simba kwemhasuru, asi izvi hazvirevi kuti nyaya yako inopera nekuongororwa. Vanhu vakawanda vane muscular dystrophy vanorarama hupenyu hwazvo, hwakanaka ne rutsigiro rwakakodzera nezano rekugadzirisa.

Kuongororwa pakutanga nekutarisirwa kwakakosha kunoita musiyano mukuru mumagumisiro. Kushanda pedyo nechikwata chehutano chinosanganisira nyanzvi, vanachiremba, nevamwe vanotsigira vanokubatsira kuramba uri pamberi pematambudziko uye kuchengetedza hupenyu hwakanaka.

Munda wekurapa uri kuramba uchichinja, nemishonga mitsva nemazano ari kugadzirwa nguva dzose. Kugara uine ruzivo nezve kufambira mberi uye kuchengetedza tariro yeramangwana kwakakosha sezvo kugadzirisa matambudziko ezuva nezuva.

Yeuka kuti kuva ne muscular dystrophy haku kukanganisi iwe chete, asi mhuri yako yese nechikwata chekutsigira. Kutsvaga rutsigiro rwepfungwa, kubatana nevamwe vanonzwisisa zvauri kuita, uye kuchengetedza kutaurirana kwakavhurika nevanhu vaunoda kunosimudzira munhu wese ano batanidzwa.

Mibvunzo inobvunzwa kazhinji nezve muscular dystrophy

Muscular dystrophy inogara here ichinakirwa kubva kuvabereki?

Kazhinji kesi dze muscular dystrophy dzino wanikwa kubva kumagwenya, asi anenge imwe-tatu ye kesi dzinobva kune itsva genetic mutations dzisina kunge dziri muvabereki. Izvi zvinoreva kuti muscular dystrophy inogona kuitika kunyangwe pasina nhoroondo yemhuri yemiriro iyi.

Muscular dystrophy inogona kuonekwa here usati wazvarwa?

Hungu, prenatal genetic testing inogona kuona marudzi mazhinji emuscular dystrophy kana paine nhoroondo yemhuri inozivikanwa kana zvinhu zvinokonzera njodzi. Aya bvunzo kazhinji inopiwa kuburikidza ne genetic counseling uye inogona kubatsira mhuri kuti dzizive zvisarudzo nezve pamuviri nekugadzirira kutarisirwa.

Muscular dystrophy inokanganisa here hungwaru kana basa repfungwa?

Marudzi mazhinji emuscular dystrophy haakanganisi hungwaru zvakananga, kunyangwe mamwe marudzi akadai seDuchenne anogona kubatanidzwa nekuoma kudzidza kana matambudziko ekutarisa. Vakawanda vanhu vane muscular dystrophy vane hunyanzvi hwepfungwa hwakanaka uye vanogona kutevera dzidzo nebasa zvakanaka.

Kuita maekisesaizi kunogona kuita kuti muscular dystrophy iipise here?

Kuita maekisesaizi akapfava, akakodzera kazhinji kunobatsira uye hakuzoipisi muscular dystrophy kana zvaitwa zvakanaka. Zvisinei, kuita maekisesaizi akakomba kana ane simba rakakura kunogona kukonzera kukuvara kwemhasuru. Gara uchishanda nechikwata chako chehutano kugadzira chirongwa chemaekisesaizi chakakodzera mamiriro ako chaiwo neunyanzvi.

Chii chinonzi upenyu hwekutarisirwa kune munhu ane muscular dystrophy?

Upenyu hwekutarisirwa hunochinja zvikuru zvichienderana nerudzi rwe muscular dystrophy uye kuti matambudziko anogadziriswa sei zvakanaka. Mamwe marudzi ane musiyano mudiki pane upenyu hwekutarisirwa, nepo mamwe anogona kuderedza upenyu hwekutarisirwa. Kufambira mberi mukutarisirwa kwezvokurapa, kunyanya rutsigiro rwekufema nemwoyo, kwakavandudza zvikuru magumisiro evanhu vakawanda vane aya mamiriro.