Unoziva nezveAlport Syndrome here? Ngatitaurei nezvazvo!

Wakamboona here kuti mune ropa shoma muweti yako? Kana kuti dzimwe nguva unonzwa sekunge kunzwa kwako kwaderera zvishoma, kana kuti kuona kwako kwakasiyana zvishoma? Izvi zvinhu zvatisinganyatso tarisiri muhupenyu hwedu hwezuva nezuva. Zvisinei, dzimwe nguva shure kwezviratidzo zvidiki izvi panogona kunge paine chirwere chinoda kutariswa, senge Alport Syndrome . Saka nhasi tichataura nezvazvo nenzira iri nyore yaunogona kunzwisisa.

Chii chinonzi Alport Syndrome?

Zvichitaurwa zviri nyore, Alport syndrome chirwere chemajini umo itsvo dzako dzisingakwanise kugadzira mapuroteni erudzi rwechina (Type IV collagen proteins).

Funga nezvazvo, iyi "Type IV collagen" inoumbwa nemaketani matatu e collagen (alpha chains) akakomberedzwa pamwe chete setambo. Maketani aya anonzi alpha 3, alpha 4, uye alpha 5. Zvino, kana muviri wako usingagadzire chero cheni idzi, dzimwe mbiri hadzigone kubatana. Ndipo panotanga zviratidzo zvakanyanya zveAlport syndrome.

Dzimwe nguva, cheni dzese idzi dzinoumbwa mumuviri wako, asi kana imwe yacho ikasagadzirwa zvakanaka, dzimwe nguva cheni hadzigone kusangana, kana kunyangwe dzikaungana, hadzishande zvakanaka. Muzviitiko izvi, zviratidzo zvinogona kudzikira zvishoma.

Puroteni iyi, inonzi ``Type IV collagen'', inokosha zvikuru pakusefa mamembrane ari muitsvo dzako, ``glomerular basement membranes kana GBM''. Iyi ``(GBM)'' ndiyo inosefa ropa rako, ichiparadzanisa chepfu nezvimwe zvinhu zvisingadiwi nemuviri uye ichibatsira kugadzira weti. Inobatsirawo kuchengetedza zvinhu zvakaita semasero eropa nemapuroteni muropa pachinzvimbo chekuenda muweti.

Zvino, kana `(GBM)` iyi isiri kushanda zvakanaka, ropa kana mapuroteni zvinogona kubuda muweti yako. Nekufamba kwenguva, kugona kweitsvo dzako kusefa weti kunodererawo. Izvi zvinowedzera njodzi yekutadza kushanda kweitsvo.

Asi izvi hazvingokanganisi itsvo chete. Iyi "Type IV collagen" inowanikwawo munzeve nemaziso ako. Saka, pamusoro pematambudziko eitsvo, munhu ane Alport syndrome anogonawo kuva nematambudziko ekuona nekunzwa.

Tinogara nhaka sei izvi?

Kune marudzi matatu makuru eAlport syndrome. Ngationei kuti ndeapi.

X-linked Alport syndrome (XLAS)

Izvi zvine chekuita nekromosomu yako yeX. Kromosomu yeX ndeimwe yemakromosomu ako maviri ebonde (X naY). Ine jini rinogadzira alpha 5 chain `(COL4A5)`.

Zvino, tarisai, murume ane chromosome imwe chete yeX nechromosome imwe yeY. Mukadzi ane ma chromosome maviri eX. Nekuti varume vane chromosome imwe chete yeX isina kunaka, vanowanzova nezviratidzo zvakakomba. Nekuti vakadzi vane chromosome imwe chete yeX isina kunaka nechromosome imwe yeX ine hutano, zviratidzo zvavo zvinowanzova zvishoma.

Murume anopa chromosome yake yeY kuvanakomana vake. Saka, havagone kupa `(XLAS)` kuvanakomana vavo. Zvisinei, murume anopa chromosome yake yeX kuvanasikana vake vese. Nokudaro, vanasikana vake vese vanogona kurwara neAlport syndrome.

Mukadzi anopa mwana wake rimwe remachromosomes ake maviri eX, zvisinei nekuti mwana wacho mukomana here kana musikana. Saka, ane mukana we50% wekupa `(XLAS)` kumwana chero upi zvake.

Iyi ndiyo mhando yeAlport syndrome inonyanya kuwanikwa, ichiverengera pakati pe60% ne80% yevarwere vese vane Alport syndrome.

Autosomal recessive Alport syndrome (ARAS)

"Autosomal" zvinoreva mapeya makumi maviri nematatu emajini e autosomal. "Autosomal recessive" zvinoreva maitiro ekugara nhaka. Kana mubereki mumwe chete aine hunhu hwe autosomal recessive, haazoratidzi zviratidzo. Kuti hupfuudzirwe kuvana vavo, vabereki vese vanofanira kunge vaine hunhu uhwu. Zvisinei, nekuti havana zviratidzo, havatombozivi kuti vanahwo.

Muchirwere cheAlport, majini anoumba mapuroteni ealpha 3 (COL4A3) nealpha 4 (COL4A4) ari pachromosome 2. "Recessive" zvinoreva kuti kuchinja kwemajini ese ari maviri epair yemajini kunodiwa kuti chirwere chiitike.

Saka, mu `(ARAS)`, pane shanduko mumajini anoisa mapuroteni e alpha 3 kana alpha 4 pa chromosome 2. `(ARAS)` haitsamiri pamurume kana mukadzi, saka nhaka uye kuoma kwezviratidzo zvakafanana kune munhu wese.

Kana uine `(ARAS)`, vana vako vane mukana we50% wekupa rimwe remajini aya asina kunaka. Izvi hazviwanzo kukonzera Alport syndrome. Zvisinei, pane mukana we25% wekupa majini ese asina kunaka kuvana vako. Kana izvi zvikaitika, mwana wako achava ne`(ARAS)`.

(ARAS) inoumba vanhu vanosvika 15% yevarwere vane chirwere cheAlport.

Autosomal dominant Alport syndrome (ADAS)

"Dominant" zvinoreva kuti chirwere chinogona kukonzerwa nekuchinja kwemajini mune rimwe chete mumajini maviri. MuADAS, pane kuchinja kwemajini mune rimwe remajini rinonyora puroteni COL4A3 kana COL4A4 pachromosome 2.

ADAS haitsamiri pakuva murume kana mukadzi, saka kugarwa nhaka uye kuoma kwezviratidzo zvakafanana kune wese munhu.

Kana uine ADAS, pane mukana we50% wekuti vana vako vapfuure jini iri risina kunaka voita ADAS.

(ADAS) inoumba pakati pe25% ne35% yevarwere vane Alport syndrome.

Izvi zvinokanganisa ani? Zvakajairika sei?

Alport syndrome inogona kubata chero ani zvake. Idambudziko rinogara nhaka, zvichireva kuti mumwe wevabereki kana vese vanoripfuudza kumwana wavo. Zvisinei, muzviitiko zvinenge 15%, rinogona kukura kunyangwe vabereki vese vasina jini rakachinja.

Vanachiremba vanofunga kuti Alport syndrome chirwere chisingawanzoitiki.Vaongorori vanoti vanhu vashoma pane 200,000 muUnited States vane chirwere ichi. Pasi rose, huwandu hwevanhu vanozvarwa vari vapenyu hunosvika mumwe chete pavana 50,000. Zvisinei, sezvo vaongorori vachiri kuramba vachidzidza izvi, vari kuwana vanhu vane zviratidzo zvishoma. Saka Alport syndrome inogona kunge yakajairika kupfuura inozivikanwa pari zvino.

Alport syndrome inokonzera sei kutadza kushanda kweitsvo?

Kana uine chirwere cheAlport syndrome, glomerular basement membranes yandambotaura nezvayo haisefe zvakanaka. Saka ropa nemapuroteni anodonhedza mvura muweti. Kwete izvozvo chete, asi masero ari kumativi ese emembranes iwayo haawane rutsigiro rwakakodzera. Zvadaro masero iwayo anotsamwa uye anozvimba . Masero aya anonzi podocytes anogadzira GBM. Kana masero akapoteredza achizvimba, mapodocytes aya anoedza kuisa collagen yerudzi rweIV muGBM. Kana izvozvo zvikaitika, GBM inokora uye inova isina kurongeka. Izvi ndizvo zvinokonzera kuti mapuroteni adonhedze mvura muweti (proteinuria).

Nekufamba kwenguva, sezvo mapuroteni akawanda achipinda muweti, GBM inokora, uye mavanga (fibrosis) anogona kuumbwa. Nekuda kweizvozvo, itsvo dzako dzinotanga kurasikirwa nekugona kwadzo kuchenesa ropa rako. Izvi zvinonzi chirwere cheitsvo chisingaperi (CKD). Sezvo mavanga akawanda achiungana, mashandiro eitsvo anowedzera kuipa, uye pakupedzisira itsvo dzinomira kushanda (kutadza kweitsvo).

Ndezvipi zviratidzo zvikuru zveAlport syndrome?

Zviratidzo zvinogona kusiyana zvichienderana nerudzi rwechirwere chaunacho. Zviratidzo zvikuru ndeizvi:

• Ropa muweti yausingaone (microscopic hematuria).
• Kuvapo kweprotein muweti (proteinuria).
• Chirwere cheitsvo chisingaperi (CKD) kana kutadza kushanda zvakanaka kweitsvo.
• Kurasikirwa nekunzwa.
• Matambudziko emaziso.

Chiratidzo chekutanga cheAlport syndrome imicroscopic hematuria. Izvi zvinoreva kuti GBM yako isina kunaka iri kukonzera kuti masero matsvuku eropa apinde muweti yako. Izvi hazvionekwe nemaziso, asi zvinongoonekwa chete nemaikorosikopu. Varume vane XLAS uye chero ani zvake ane ARAS vanogona kuva nemicroscopic hematuria kubva pakuzvarwa. Vakadzi vazhinji vane XLAS vanova nemicroscopic hematuria nekufamba kwenguva. Havasi vese vane ADAS vanova nemicroscopic hematuria.

Chirwere cheitsvo chisingaperi (CKD) chinotanga kana mashandiro eitsvo atanga kudzikira. Vanhu vazhinji havaratidzi zviratidzo zveCKD kusvika itsvo dzavo dzatadza kuvhiyiwa.

Zviratidzo zvekutadza kushanda kweitsvo:

• Kuzvimba (edema), kunyanya pedyo nemaoko kana makumbo.
• Kuneta kwakanyanya.
• Kusvotwa nekurutsa.
• Kurwadziwa kwetsandanyama.

Kurasikirwa nekunzwa kwakajairika muvarume vane XLAS neARAS. Asi zvinogona kuitika kune chero munhu ane Alport syndrome. Kurasikirwa nekunzwa kunoitika zvishoma nezvishoma. Vanhu vazhinji havazvioni kusvika zvanonoka. Vanhu vazhinji vanonetseka nekunzwa ruzha rwakakwirira, uye vamwe vanogona kupedzisira varasikirwa nekunzwa kwese. Ungazofanira kushandisa zvinhu zvinobatsira kunzwa. Muzviitiko zvakakomba, unogona kutorasikirwa nekunzwa kwako zvachose (kusanzwa).

Kunewo matambudziko akasiyana-siyana nemaziso. Vamwe vanhu vanowanzova nemavanga e cornea, izvo zvinotora nguva yakareba kuti zvipore. Izvi zvinogona kukonzera maziso ane mvura uye kurwadziwa, asi kazhinji hazvikonzeri kurasikirwa nekuona. Vamwe vanhu vane matambudziko nechikamu chakajeka cheziso, lenzi, iyo inobatsira kutarisa kuona, uye inogona pakupedzisira kuva nekatarakita.

Kana uine chirwere cheAlport uye uine matambudziko ekunzwa kana kuona, enda kuna chiremba nekukasika.

Chii chinokonzera Alport syndrome?

Zvichitaurwa zviri nyore, izvi zvinokonzerwa nekuchinja kwemajini ako ecollagen.

Izvi zvinotapurirana here?

Kwete, chirwere cheAlport hachisi chirwere chinotapuriranwa. Hachitapurirwi kubva kumunhu mumwe kuenda kune mumwe kuburikidza nekubatana kwepedyo. Ichirwere chinogara nhaka.

Unozviziva sei izvi?

Kana uine microscopic hematuria kana chirwere cheitsvo chisingaperi, chiremba anogona kufungidzira kuti une Alport syndrome. Kana mumwe munhu mumhuri mako aine Alport syndrome, bvunzo dzinogona kuiona. Kana pasina munhu mumhuri mako ane chirwere ichi, chiremba anogona kukuongorora zvichibva pane zvakaitika kwauri panyaya dzehutano uye zvimwe zviedzo.

Chiremba achaongorora zviratidzo zvako uye achakubvunza nezvenhoroondo yezveutano hwemhuri yako. Miedzo yakasiyana-siyana inogonawo kubatsira kuona izvi. Miedzo iyi inosanganisira:

• Kuongororwa kweweti: Izvi zvinoedza chitarisiko, makemikoro, uye hunhu husingaonekwe hweweti yako. Zvinogona kuona kana muweti muine ropa kana mapuroteni.
• Kuongororwa kweCreatinine clearance kana kuti kuongororwa kweropa recystatin C: Kuongororwa uku kunoyera huwandu hwecreatinine necystatin C, tsvina, muropa rako. Izvi zvinogona kuratidza kuti itsvo dzako dziri kusefa ropa rako zvakanaka sei.
• Chiyero chinofungidzirwa chekupfapfaidza kweglomerular (eGFR): Ichi chiyero chinoverengwa nachiremba kubva ku creatinine kana cystatin C. Chinoongorora kuti itsvo dzako dziri kuchenesa ropa rako zvakanaka sei.
• Kuongororwa kweitsvo: Chiremba anotora zvidimbu zvidiki zvenyama yeitsvo yako ozviongorora pasi pemaikorosikopu murabhoritari. Mienzaniso iyi inoratidza maitiro akasiyana ari kukanganisa itsvo dzako. MuAlport syndrome, maGBM asina kunaka anoita seakatetepa, asi panogonawo kunge paine nzvimbo dzakakora. Kana chirwere chacho chakakomba, chinogona kuratidza mavanga emidziyo yekusefa uye zvivakwa zvinotsigira.
• Kuongororwa kwemajini: Izvi zvinogona kuona shanduko mumajini ako ecollagen. Izvi zvinoda kushanya kukiriniki yezvemajini yakasarudzika. Chiremba achaita izvi nekuongororwa ropa kana sampu yemate.
• Kuongororwa kwekunzwa (audiogram): Kana chiremba achifungidzira kuti ane chirwere cheAlport, vanogona kuraira kuongororwa kwekunzwa. Munhu wese ane chirwere cheAlport anofanira kuongororwa. Kuongororwa uku kunofanirwa kuitwa makore mashoma ega ega kuti vaone kana kurasikirwa nekunzwa kuri kudzikira kana kuti kuri kuwedzera kuipa.
• Kuongororwa kwemaziso: Bvunzo iyi inofanira kuitwa nachiremba wemaziso ane hunyanzvi mukuongorora nekurapa zvirwere zvemaziso. Vachaongorora kuona kwako uye vanotarisa pamusoro peziso rako (cornea), lenzi, nekumashure kweziso rako (retina) kuti vaone kana Alport syndrome yakakanganisa kuona kwako. Vanogonawo kuita bvunzo yekufungidzira inonzi optical coherence tomography (OCT).

Ko Alport syndrome inogona kurapwa here? Mishonga yacho ndeipi?

Hapana mushonga weAlport syndrome. Vaongorori vari kushanda pakurapa majini anogadzirisa majini asina kunaka, asi haasati abudirira. Kunyangwe kana kurapwa kwemajini kukabudirira, zvichatora makore tisati tava nako. Zvisinei, kune mishonga inogona kunonotsa kudzikira kwebasa reitsvo uye kunonotsa kutadza kweitsvo.

Chiremba anogona kunyora zvinhu zvakaita se:

• Mishonga inodzivirira angiotensin-converting enzyme (ACE): Inoderedza BP yako, inoderedza mapuroteni muweti yako, uye inobatsira kudzivirira itsvo dzako. Varume vane (XLAS) uye chero ani zvake ane (ARAS) vanofanira kutanga kutora mishonga inodzivirira ACE mushure mekuongororwa. Vakadzi vane (XLAS) kana (ADAS) vanofanira kutanga kutora mishonga inodzivirira ACE pavanongotanga kuona mapuroteni muweti yavo, kana panguva yekuongororwa.
• Angiotensin II receptor blockers (ARBs): MaARB akafanana neACE inhibitors uye ane mabhenefiti akafanana.
• Mishonga inodzivirira chirwere cherudzi rwechipiri (SGLT-2) inofambiswa nesodium-glucose: Kana uine CKD kana Alport syndrome, mishonga inodzivirira chirwere cheSGLT-2 inogona kubatsira kuderedza njodzi yekukundikana kweitsvo. Chiremba wako anogona kuwedzera izvi kumushonga wako weACE inhibitor kana ARB. Haasi ese mishonga inodzivirira chirwere cheSGLT-2 inotenderwa kurapa CKD. Chiremba wako angasakupa izvi kana eGFR yako yakaderera.
• Kudya kunodzorwa nesodium: Kuderedza huwandu hwemunyu nesodium mukudya kwako kunogona kubatsira kuderedza BP uye kuchengetedza hutano hweitsvo nemwoyo.

Kuisirwa itsvo kunogona kurapa chirwere cheAlport here?

Ehe uye kwete. Kana uchiisirwa itsvo, unowana itsvo ine "Type IV collagen" yakajairika uye ma "filtration membranes". Saka, Alport syndrome haizodzoki muitsvo itsva.

Zvisinei, kuisirwa itsvo hakubatsiri pazvirwere zvimwe zvakaita sekurasikirwa nekunzwa uye matambudziko emaziso.

Tingadzivirira sei izvi?

Alport syndrome haigone kudzivirirwa. Zvisinei, kuziva nhoroondo yemhuri yako kunogona kukubatsira kuiona nekukurumidza. Inogonawo kukubatsira kudzivirira vana vako kuti vasaipfuure.

Kuongororwa kwechirwere cheAlport nekukurumidza uye kutanga kurapwa neACE inhibitors/ARBs uye SGLT-2 inhibitors ndiyo nzira yakanakisisa yekunonotsa kutadza kweitsvo.

Kana chiremba akati une ropa muweti yako, zvakanaka kuti uongororwe zvimwe zvirwere zveAlport syndrome, kunyanya kana uine matambudziko ekunzwa kana kuti itsvo dzisina kushanda zvakanaka.

Kana mumwe munhu mumhuri yako aine nhoroondo yeropa muweti (hematuria), chiremba anofanira kutarisa weti yako kuti ione kana iine ropa uye oita bvunzo dzeropa kuti aone mashandiro eitsvo dzako.

Tarisiro yangu yekurarama ichange yakaita sei kana ndiine Alport syndrome?

Varume vane `(XLAS)` uye chero ani zvake ane `(ARAS)` vanowanzova nekutadza kushanda kweitsvo uye kurasikirwa nekunzwa vasati vasvitsa makore makumi matatu.

Vakadzi vane XLAS vanowanzova nehupenyu hwakajairwa. Ungave uine microscopic hematuria, proteinuria, CKD, kana itsvo kutadza kushanda zvakanaka uye kunzwa kurasikirwa neruzivo. Munhu wese anopindura zvakasiyana. Asi 16% yevakadzi vachave neitsvo kutadza kushanda zvakanaka pazera remakore 60, uye 20% vachave nezera remakore 80.

Vanhu vane `(ADAS)` vanogona kuva nemhinduro dzakasiyana, uye vanogona kurarama hupenyu hwakajairika. Kurasikirwa nekunzwa uye kutadza kushanda kweitsvo hazviwanzoitika mu`(ADAS)`.

Chirwere cheitsvo chisingaperi (CKD) uye kutadza kushanda kweitsvo zvinowanzopfupisa hupenyu hwevanhu vane Alport syndrome. CKD inowedzera njodzi yekufa nekuda kwechirwere chemwoyo uye sitiroko. Kutadza kushanda kweitsvo kunouraya pasina dialysis kana kuisirwa itsvo. Kunyangwe nekurapwa, kutadza kushanda kweitsvo kunowedzera njodzi yekufa nekuda kwechirwere chemwoyo, sitiroko, uye hutachiona. Zvichienderana nekuti itsvo yakaisirwa inoshanda sei, kuisirwa itsvo kunogona kukubatsira kurarama hupenyu hwakajairika.

Ndinozvitarisira sei?

Kana uine chirwere cheAlport, chiremba achakubatsira kugadzira hurongwa hwakanakisisa hwekurapa. Izvi zvinogona kusanganisira mishonga uye shanduko dzemararamiro.

Kurapwa

• Tora mishonga inodzivirira ACE, ARBs, kana SGLT-2 inhibitors sezvakarairwa nachiremba wako.
• Dzivisa kutora mishonga inoderedza marwadzo (isina steroidal anti-inflammatory drugs - NSAIDs). Iyi mishonga inogona kukurumidzisa kutadza kushanda zvakanaka kweitsvo kana uine dambudziko rekushanda kweitsvo zvisina kunaka kana kuti Alport syndrome.
• Tarisa kunzwa kwako.Kana uine dambudziko guru rekunzwa uye chiremba wako achikurudzira zvinhu zvinobatsira kunzwa, zvakanaka kuzvishandisa. Kana zvisina kudaro, ungaomerwa nekutaura nevamwe, zvichiita kuti unzwe wakasurukirwa uye wakasurukirwa. Manzwiro aya ekuzviparadzanisa nevamwe anogona kutungamira mukuora mwoyo. Zvinhu zvinobatsira kunzwa zvinogona kuvandudza hukama hwako nevaya vakakupoteredza, kugadzirisa manzwiro ako, uye kukubatsira kudzora kana kudzivirira kuora mwoyo.
• Chengetedza hutano hwepfungwa dzako. Kuva nechirwere chemajini kunogona kukonzera kusurukirwa, uye kudzidza kuti Alport syndrome inogona kukonzera kusashanda zvakanaka kweitsvo kana kurasikirwa nekunzwa kunogona kuwedzera njodzi yako yekuora mwoyo. Zvakakosha kutaura nachiremba wako nezvematambudziko ehutano hwepfungwa auri kuita uye kuwana kurapwa kwaunoda. Bvunza chiremba wako kana paine mapoka ekutsigira vanhu vane Alport syndrome. Kusangana nevanhu vakadaro kunogona kukubatsira kuti usanyanya kusurukirwa.

Kuchinja kwemararamiro

• Deredza huwandu hwemunyu muchikafu chako.
• Kana uine CKD, ungangoda kudya zvakasiyana. Izvi zvinogona kusanganisira kuderedza kudya kwako mapuroteni emhuka, kuchinja kudya kwezvirimwa, kudzivisa kudya zvine potassium yakawanda kana uine potassium yakawanda muropa, uye kuderedza kudya mapuroteni kana uine phosphorus yakawanda muropa kana parathyroid hormone (PTH).
• Kutevedzera mararamiro ane hutano hwemwoyo kunogona kubatsira kuderedza njodzi yekubatwa nechirwere chemwoyo, chirwere cheshuga, nezvimwe zvirwere zvinogona kukonzera kutadza kushanda zvakanaka kweitsvo. Kurovedza muviri kwakadai sekufamba nekukurumidza, kumhanya-mhanya, kushambira, kuchovha bhasikoro, uye kusvetuka tambo kwakanaka. Zvakanakawo kuchengetedza huremu hwakanaka hwakakunakira.
• Dzivisa kusvuta nezvimwe zvigadzirwa zvefodya. Ona chiremba kana uchida rubatsiro rwekurega kusvuta.

Ndinofanira kuona chiremba rini?

Ona chiremba kana uine ropa muweti yako, kunzwa kwako kusina kunaka, kana kusaona zvakanaka. Izvi zvinogona kuva zviratidzo zveAlport syndrome.

Kana uine chirwere cheAlport, iva nechokwadi chekuti chiremba wako anokutumira kuna chiremba weitsvo (nephrologist).

Kana mumwe munhu mumhuri mako aine chirwere cheAlport, enda kuna chiremba kuti uone kana iwewo uine chirwere ichi.

Mibvunzo ipi yandinofanira kubvunza chiremba wangu?

Kana uchifunga kuti ungave uine Alport syndrome, kana kuti kana mumwe munhu mumhuri mako aine Alport syndrome, bvunza chiremba wako mibvunzo iyi:

• Unoziva here kuti ungaziva sei Alport syndrome?
• Munganditumirewo kuna nyanzvi inoziva maitiro ekuongorora chirwere cheAlport here?
• Mune ropa here muweti yangu?
• Kushanda kweitsvo dzangu kuri kudzikira here?
• Ndoongororwa here kana kuti kuongororwa maziso?
• Ndinofanira kuongororwa itsvo here?
• Ndofanira kuongororwa majini here?

Kana uine Alport syndrome, bvunza chiremba wako mibvunzo iyi:

• Unoziva sei kuti ndine Alport syndrome?
• Ndingatumirwa riini kuna chiremba weitsvo (nephrologist) anoziva nezveAlport syndrome?
• Ndine rudzii rweAlport syndrome?
• Ndichapfuudza chirwere cheAlport kuvana vangu here?
• Chii chinonzi `(GFR)` yangu?
• Muweti mangu mune mapuroteni akawanda sei?
• Unotanga rini mushonga we `(ACE inhibitor)` kana `(ARB)`?
• Ndichabatsirwa here nemushonga weSGLT-2 inhibitor?
• Ndeipi mimwe mishonga yaunokurudzira?
• Ndinofanira kuronga kangani nguva yekuona hutano hweitsvo dzangu?
• Ndinofanira kuongororwa nzeve dzangu kangani?
• Ndinofanira kuona chiremba wemaziso kuti anditarise here?
• Unogona here kukurudzira mapoka ekutsigira vanhu vane Alport syndrome?

Alport syndrome chirwere chinokuvadza tsinga dzeropa dziri muitsvo dzako. Kuchinja kwemajini ako kunokanganisa mashandiro anoita itsvo dzako, uye kunogonawo kukanganisa kunzwa kwako nekuona kwako.

Unogona kusangana nemanzwiro akasiyana-siyana sezvaunosvika pakuziva chirwere ichi uye kuti Alport syndrome inokanganisa sei hupenyu hwako. Zvakakosha kuzvipa nguva nenzvimbo yekunzwisisa mamiriro ako uye nzira dzekurapa. Kuziva sarudzo dzako uye zvekutarisira kunogona kukubatsira kudzora manzwiro ako. Ndiwe unoita sarudzo dzekupedzisira nezvehutano hwako, uye chiremba wako aripo kuti akupe ruzivo nenhungamiro. Kana uine mibvunzo, uchida rutsigiro, kana uchida mazano, taura navo.

Shoko rakakosha kupfuura ose rekuenda naro kumba

Kunyange hazvo Alport syndrome iri chirwere chakakomba, chinotora nguva yakareba, kuonekwa nekukurumidza uye kurapwa kwakakodzera kunogona kubatsira vanhu kurarama hupenyu hwakajairika.

Kana mumwe munhu mumhuri yako aine zviratidzo izvi (kunyanya ropa muweti, kurasikirwa nekunzwa), kana kuti uchizviwana iwe pachako, hazvisati zvanyanya kunonoka kutsvaga mazano echiremba. Nekuongororwa kwakakodzera uye kurapwa, unogona kuderedza kukuvara kweitsvo uye kuchengetedza hupenyu hwako hwakanaka. Yeuka, hausi wega, uye vanachiremba nevadikanwi vako varipo kuti vakubatsire.

Alport syndrome, chirwere cheitsvo, zvirwere zvemajini, collagen, ropa muweti, kurasikirwa nekunzwa, zvirwere zvemaziso