Unonzwawo here kuti wakareba uye une maoko nemakumbo akareba kupfuura shamwari dzako? Kana kuti majoini ako anotyoka nyore here? Wakambopfeka magirazi kubvira paudiki here? Kana chimwe chezvinhu izvi chichishanda kwauri, zvingave zvakakosha kuti uzive nezvechirwere chatiri kutaura nezvacho nhasi, chinonzi Marfan Syndrome. Kunyangwe izvi zvisingawanzoitiki, ngatitaure nezvazvo zviri nyore.
Zvichitaurwa zviri nyore, chii chinonzi Marfan Syndrome?
Funga nezvemuviri wedu sechivakwa chakavakwa zvakanaka. Zvidhinha, madziro, nedenga rechivakwa ichi zvinobatanidzwa pamwe chete uye zvinosimbiswa nesimbi yesimbi. Saizvozvowo, kune rudzi rwakakosha rwenyama runobatanidza zvese zviri mumuviri wedu, zvakaita senhengo, mapfupa, tsandanyama, netsinga dzeropa, uye zvinopa simba uye kusununguka kwazvinoda. Mukurapa, tinodana izvi kuti "nyama inobatanidza." Izvi zvakaita se'chingamu' chiri mumuviri wedu.
Marfan Syndrome chirwere chinokonzerwa nemajini. Munhu ane chirwere ichi ane nhengo dzisina kusimba, kana kuti, dzakasununguka zvakanyanya. Izvi zvinoreva kuti nhengo dzakabatana hadzina kusimba zvakanyanya uye dzinopfava. Nekuti nhengo idzi dzinobatana dzinowanikwa mumuviri wese, Marfan Syndrome inogona kukanganisa nhengo dzakasiyana dzemuviri wedu. Inogona kukanganisa moyo, mitsipa yeropa, maziso, mapfupa, uye majoini .
Kunyangwe ichi chiri chirwere chekuzvarwa nacho, dzimwe nguva zviratidzo zvinoonekwa uye chirwere ichi chinoonekwa pazera diki.
Ndezvipi zviratidzo zveizvi?
Chinhu chakakosha kunzwisisa pano ndechekuti havasi vese vane Marfan Syndrome vanozosangana nezviratidzo zvakafanana. Zvinosiyana zvikuru kubva kumunhu kuenda kumunhu. Vamwe vanhu vanogona kunge vaine zviratidzo zvakawanda, nepo vamwe vangangova nezvishoma. Ndosaka vanachiremba vachidana izvi kuti chirwere chine "kushanduka kwezviratidzo."
Zvisinei, kune zvimwe zvinhu zvakafanana zvinogona kuonekwa. Ngatizviparadzanisei muzvikamu zviviri.
| Zvinhu zviviri zvikuru zveMarfan Syndrome | |
|---|---|
| Aneurysm yemidzi yeAortic | Aorta ndiyo tsinga huru yeropa inotakura ropa kubva pamwoyo wedu kuenda kumuviri wese. Chikamu chekutanga chayo, chinobatana nemoyo, chinogona kushaya simba uye kuzvimba uye kukura sebharumu. Ichi ndicho chiratidzo chine njodzi zvikuru chechirwere ichi. |
| Ectopia lentis (kubviswa kwelenzi yeziso) | Lenzi iri mukati memaziso edu, nekuda kwekusasimba kweshinda dzakapfava dzinoibata panzvimbo yayo, inogona kufamba zvishoma kubva payaifanira kuva. Izvi zvinokonzera kutadza kuona zvakanaka. |
Kuwedzera kune izvi zvinhu zviviri zvikuru, zvimwe zvinhu zvine chekuita nechitarisiko chemuviri zvinowanzoonekwa.
| Hunhu hwakajairika hune chekuita nechitarisiko chemuviri | |
|---|---|
| Rudzi rwemuviri | Kuva nemuviri murefu uye mutete zvisingawanzoitiki. |
| Maoko, tsoka, minwe | Maoko, makumbo, maoko, neminwe zvakareba zvisingawanzoitiki zvichienzaniswa nezvimwe zvikamu zvemuviri. |
| Chiso | Chimiro chechiso chakareba, chakatetepa. |
| Musana | Kurwara neScoliosis. |
| chipfuva | Bopa rechipfuva rakanyura mukati (Pectus excavatum) kana kuti rinobuda kunze (Pectus carinatum). |
| Mugero | Majoini anochinjika zvikuru uye anowanzo shanduka. |
| Tsoka | Tsoka dzakati sandara. |
| Mazino | Mazino akawandisa nekuda kwekushaya nzvimbo mumuromo. |
| Ganda | Mavanga ekutambanudza anoonekwa pamusoro peganda kunyangwe pasina kuchinja kwehuremu hwemuviri. |
Ndezvipi zvinetso zvinogona kuitika nekuda kweMarfan Syndrome?
Kana chirwere ichi chikasatarisirwa zvakanaka, matambudziko akakomba anogona kuitika nekufamba kwenguva.
Migumisiro inogona kuitika pamwoyo netsinga dzeropa
Aya ndiwo matambudziko anoda kutariswa zvakanyanya muMarfan Syndrome.
- Kupatsanurwa kwetsinga dzeropa: Uku ndiko kune njodzi huru. Madziro etsinga dzeropa ane zvikamu zvakasiyana-siyana. Kutsemuka kamwe kamwe kwemukati metsinga dzeropa kunogona kukonzera kuti ropa ribude pakati pezvikamu izvi. Uku kurwara kunouraya kunoda kuvhiyiwa nekukurumidza.
- Chirwere chevharuvhu yemwoyo: Mavharuvhu ari mumoyo anoshaya simba uye anogona kusavhara zvakanaka, zvichiita kuti ropa ribude richidzokera kumashure.
- Mwoyo wakakura: Tsandanyama dzemwoyo dzinogona kukura uye kusasimba nekuti moyo unofanirwa kushanda nesimba nekufamba kwenguva.
- Kusarongeka kwekurova kwemoyo (Arrhythmia): Kurova kwemoyo kunogona kusarongeka.
- Kuora kwetsinga dzeuropi: Nzvimbo isina kusimba mutsinga yeropa iri muuropi kana kuti yakakomberedza inogona kuzvimba sebharumu.
Mhedzisiro pamaziso
- Matumbu emusoro
- Glaucoma
- Kubviswa kweRetinal
Mhedzisiro pamapapu
Kusasimba kwenhengo dzinobatana kunogonawo kukanganisa mapapu.
- Asima
- Zvirwere zvemapapu (bronchitis, pneumonia)
- Mapapu akadonha (Pneumothorax)
Zvakakosha kugara wakangwarira uye kuongororwa nachiremba kuti uone matambudziko ane chekuita nemoyo neaorta muMarfan Syndrome.
Sei Marfan Syndrome ichiitika? Chii chinokonzera?
Chikonzero chikuru cheizvi ikuchinja kwemajini, Fibrillin-1, inowanikwa munyama dzinobatana dzemuviri wedu.Kune jini rinodzora kugadzirwa kwepuroteni inonzi ``fibrillin.`' Inonzi ``FBN1'' gene. Vanhu vane Marfan Syndrome vane shanduko yakati, kana chikanganiso (variant), mujini iri re``FBN1''. Izvi zvinoita kuti muviri ugadzire puroteni isina simba yefibrillin.
- Kazhinji (inenge 75%) majini asina kunaka anotorwa kubva kumubereki mumwe chete. Kana mumwe wevabereki vane chirwere ichi, mwana mumwe nemumwe ane mukana we50% wekugara nhaka chirwere ichi.
- Muzvikamu makumi maviri nemashanu kubva muzana (25%) zvezviitiko, mwana anogona kuita shanduko yemajini kunyangwe vabereki vasina chirwere ichi. Chikonzero chaicho hachisati chawanikwa.
Vanachiremba vanozviwana sei izvi?
Nekuti Marfan Syndrome inokanganisa nhengo dzakawanda dzemuviri, zvinogona kutora timu yevanachiremba vanobva kuhunyanzvi hwakasiyana kuti vaongorore chirwere ichi nemazvo. Chiremba wako anowanzo tevera matanho aya:
- Kubvunza nezvenhoroondo yako yezvekurapa nezviratidzo: Kubvunza nezve chero kusagadzikana kwauri kusangana nako, matambudziko ekuona, kana kurwadziwa kwemajoini.
- Kuongorora muviri kwakakwana: kunoyera kureba, huremu, kureba kwemakumbo, kana paine kurwadziwa kwemusana, uye chimiro chechipfuva.
- Kubvunza nezvenhoroondo yezveutano hwemhuri: Kubvunza nezvezvinhu zvakaita sekuti pane mumwe munhu mumhuri akambova nezviratidzo izvi here, kana kuti pane akafa nekumira kwemwoyo kamwe kamwe.
- Kutumirwa kune bvunzo dzakakosha:
- Echocardiogram (Echo test): Iyi ndiyo bvunzo inonyanya kukosha. Inogona kutarisa mamiriro emwoyo neaorta, uye mashandiro emavharuvhu.
- Electrocardiogram (ECG): Tarisa kana mwoyo usina kumira zvakanaka.
- Kuongororwa kweCT kana MRI: Ona hurefu hwese hweaorta nedzimwe tsinga dzeropa zvakadzama.
- Kuongorora ziso: Kuziva nzvimbo ye lenzi yeziso nezvimwe zvinetso.
- Kuongororwa kwemajini: Sampuro yeropa inogona kutorwa kuti ione kana paine chikanganiso mujini re'FBN1'.
Ndezvipi zvinorapwa izvi?
Chekutanga, hapana mushonga weMarfan Syndrome. Asi musazvidya mwoyo. Zvinokwanisika kuibata zvakanaka, kudzivirira matambudziko, uye kurarama hupenyu hwakanaka. Chinangwa chikuru chekurapa ndechekudzora zviratidzo uye kudzivirira matambudziko ane njodzi.
Mishonga
- Beta-blockers: Mishonga iyi inoderedza kurova kwemoyo zvishoma, inoderedza BP, uye inoderedza BP paaorta. Izvi zvinogona kuderedza BP iyo aorta inokura.
- Angiotensin II Receptor Blockers (ARBs): Mishonga iyi inobatsirawo kudzivirira aorta.
Kutarisa Nguva Dzose
Ichi ndicho chikamu chakakosha pakutarisira varwere. Unofanira kuona chiremba nguva nenguva woongororwa.
- Mwoyo netsinga dzeropa: Kuongororwa kwe echo kunoitwa kanenge kamwe chete pagore kuti vaone kana paine shanduko muhukuru hwe aorta.
- Maziso: Unofanira kuongororwa maziso ako nguva nenguva nachiremba wemaziso.
- Sisitimu yemafupa: Unofanirawo kutarisisa zvinhu zvakaita semusana wako.
Mazano ekurovedza muviri
Kurovedza muviri kwakanaka kune munhu ane Marfan Syndrome, asi hazvisi zvese zvinorovedza muviri zvakanaka. Mamwe maekisesaizi akasimba anogona kumanikidza aorta. Saka, zvakakosha kutaura nachiremba wako kuti uwane kuti ndeapi maekisesaizi akakunakira.
| Mabasa akakodzera (kazhinji) | Zvinhu zvekudzivisa/kusaita |
|---|---|
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Kuvhiyiwa kweMwoyo
Kana aorta ikakura zvine njodzi, vanachiremba vanogona kukurudzira kuvhiyiwa kuti vabvise chikamu chisina kusimba uye kuisa graft isati yatsemuka. Kana mavharuvhu emwoyo akakuvara, kuvhiyiwa kunogona kuitwa kuti kugadziriswe kana kutsiviwa.
Hupenyu uye hutano hwepfungwa neMarfan Syndrome
Kurarama neMarfan Syndrome kunogona kuoma dzimwe nguva. Kugara uchiona vanachiremba, uchitora mishonga, uye uchichinja mararamiro zvinogona kunetsa.
Uye zvakare,
- Kufunga nezvechitarisiko chemuviri wako kunogona kukonzera kuzvidya mwoyo.
- Kurwadziwa kwemuviri nguva nenguva uye kuneta.
- Kana usingakwanise kutamba mitambo, kumhanya-mhanya, uye kutamba sevamwe vanhu, unogona kunzwa sekunge uri wega.
- Zvinhu zvakaita seremangwana uye kutanga mhuri zvinogona kukonzera kutya.
Nekuda kwezvikonzero izvi, pane njodzi yekusangana nematambudziko epfungwa akadai sekuzvidya mwoyo uye kuora mwoyo .
Yeuka kuti hutano hwepfungwa dzako hwakakosha sehutano hwako hwemuviri. Kana uchinzwa kushushikana kana kunetseka, taura nemumwe munhu waunovimba naye. Kana zvichidikanwa, usambozeza kutsvaga rubatsiro kubva kuna chiremba wepfungwa kana mupi wezano.
Nekuda kweruzivo rwatinarwo nezveMarfan Syndrome nemishonga mitsva, hupenyu hwemunhu ane chirwere ichi hwava hwakafanana nehwemunhuwo zvake. Chinhu chakakosha ndechekuziva chirwere ichi nekukurumidza uye kuchigadzirisa nemazvo.
Mharidzo Yekuenda Nayo Kumba
- Marfan Syndrome chirwere chemajini chinopedza simba nhengo dzemuviri wedu.
- Hunhu hukuru hurefu husingawanzoitika , muviri mutete, makumbo marefu, majoini asina kusimba, uye matambudziko ekuona.
- Dambudziko guru rechirwere ichi injodzi yekupararira uye kuputika kweaorta.
- Kunyange hazvo pasina mushonga wakakwana weizvi, zvinogona kutarisirwa zvakanaka uye hupenyu hune hutano hunogona kutungamirirwa nemishonga, kuongororwa nguva dzose kwechiremba (kunyanya bvunzo dze echo), uye shanduko dzemararamiro.
- Kana uchifungidzira kuti iwe kana mumwe munhu wemumhuri mako ane zviratidzo izvi, enda kuna chiremba wako nekukasika kuti mukurukure nezvazvo. Kuonekwa kwechirwere ichi nekukurumidza kwakakosha zvikuru.
- Chengetedza hutano hwepfungwa dzako pamwe chete nehutano hwako hwemuviri. Tsvaga rubatsiro kana uchida.
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