Dzimwe nguva unonzwa kurwadziwa kusingatsungiririki uye kuzvimba mumaoko ako netsoka, pamwe chete nemavanga matsvuku mumuviri wako here? Paunoerekana waona zviratidzo zvinoita sezvisina chekuita, zvinogona kuva dambudziko guru. Nhasi tiri kutaura nezvechirwere chinogona kukonzera zviratidzo zvakafanana, asi vanhu vazhinji munyika medu havasati vanzwa nezvazvo. Icho chirwere cheFabry.
Zvichitaurwa zviri nyore, chii chinonzi Fabry Disease?
Chirwere cheFabry chirwere chemajini chinotorwa kubva kumajini edu. Hazviwanzoitiki. Munhu ane chirwere ichi ane mafuta akawanda mumasero emuviri wake. Fungidzira kuti chii chingaitika dai muunganidzi wemarara akasauya kumba kwedu kwemazuva mashoma? Marara anoungana mumba medu, handiti? Ndizvo zvazviri. Muchirwere ichi, enzyme inopwanya nekubvisa mafuta aya mumasero edu haigadzirwe mumuviri, kana kuti haishande nemazvo.
Kana mafuta akaungana nenzira iyi, tsinga dzedu dzeropa dzinotanga kutetepa. Izvi zvinogona kukonzera kukuvara kweganda, itsvo, mwoyo, uropi, uye tsinga . Vanachiremba vanotiwo izvi "kusagadzikana kwekuchengetedza zvinhu." Zviratidzo izvi zvinowanzotanga muhudiki. Uye zvinowanzoitika kuvarume kupfuura kuvakadzi.
Usazvidya moyo. Kunyange hazvo pasina mushonga weizvi, kune mishonga yakanaka iripo nhasi inogona kukubatsira kudzora zviratidzo zvako uye kurarama hupenyu hwakajairika.
Chii chinokonzera chirwere cheFabry?
Ichi chirwere chinokonzerwa nemajini chete. Izvi zvinoreva kuti chinhu chaunogara nhaka kubva kuna amai vako kana baba vako. Tinoda enzyme inonzi alpha-galactosidase A kuti iparadze zvinhu zvakaita semafuta, wakisi, uye mafuta acids mumiviri yedu. Munhu ane chirwere cheFabry haana enzyme iyi, kana kuti kana ikashanda, haishande nemazvo. Saka, sezvandambotaura, rudzi urwu rwemafuta runotanga kuungana mukati memasero.
Ndezvipi zviratidzo zvechirwere ichi?
Zviratidzo zvechirwere cheFabry zvinogona kusiyana kubva pamunhu kusvika pamunhu. Vamwe vanhu vanobatwa zvakanyanya nezviratidzo izvi, nepo vamwe vasina kubatwa zvakanyanya. Ngatitarisei zviratidzo zvikuru zvinogona kuonekwa.
| Chiratidzo | Tsananguro |
|---|---|
| Marwadzo nekuzvimba mumakumbo | Marwadzo aya anowedzera panguva yekurovedza muviri, kana uine fivha, kana uchipisa zvakanyanya, kana kuti kana wakaneta. |
| Mavara eganda | Mavara madiki matsvuku kana epepuru anonyanya kuonekwa pakati pemagaro nemabvi. |
| Kutadza kuona zvakanaka | Zvirwere zvakaita sekuona kusina kujeka kana kuti cataract. |
| Matambudziko ekunzwa | Kurasikirwa nekunzwa kana "kurira" nguva dzose munzeve. |
| Kudzikira kwedikita | Kudikitira zvishoma pane munhuwo zvake kunodikitira zvishoma. |
| Matambudziko ekugaya chikafu | Kurwadziwa mudumbu uye kuda kuita tsvina pakarepo mushure mekudya. |
Matambudziko akakomba
Chirwere cheFabry chinogona kukonzera matambudziko akakomba nekufamba kwenguva. Njodzi iyi yakanyanya kuwanda kuvarume. Zvisinei, vakadzi vane majini echirwere ichi (vanotakura) vanogonawo kuva nezviratidzo. Saka, zvakakosha kuti vakadzi vazive nezvechirwere ichi uye vatsvage mazano echiremba nguva dzose.
- Kuwanda kwenjodzi yekurwara nemoyo kana sitiroko .
- Kukuvara kwakanyanya kweitsvo uye kutadza kushanda zvakanaka kweitsvo.
- Kukwira kweropa.
- Kukundikana kwemoyo uye kukura kwemoyo.
- Kutetepa kwemapfupa (Osteoporosis).
Nzira yekuziva chirwere ichi nemazvo sei?
Kutaura chokwadi, dzimwe nguva zvinotora nguva yakareba kuti chirwere cheFabry chionekwe. Chikonzero ndechekuti zviratidzo zvacho zvakafanana nezvezvimwe zvirwere zvakawanda. Nekuda kweizvozvo, vamwe vanhu havazivi kuti vane chirwere cheFabry kusvika makore akawanda zviratidzo zvatanga. Munguva iyoyo, vanogona kunge vakaona vanachiremba vakasiyana nekuda kwezviratidzo zvakasiyana, uye dzimwe nguva vakatowana zviratidzo zvisirizvo.
Kana mumwe munhu mumhuri mako aine zviratidzo izvi uye uchifunga kuti uri panjodzi, zvakanaka kutaura nachiremba wako nezvekuongororwa kwemajini .
Paunoenda kunoona chiremba, achakuongorora uye achakubvunza mibvunzo yakaita seiyi:
- Uri kunzwa sei?
- Zviratidzo zvako ndezvipi?
- Izvi zvakatanga rini?
- Pane mumwe munhu mumhuri yako ane chero chezvirwere izvi here?
Zvichibva paruzivo urwu, kana chiremba akafungidzira kuti ichi chingave chirwere cheFabry, achakukumbira kuti uongororwe ropa (kuti utarise huwandu hwe alpha-galactosidase A enzyme yandataura) kana kuti uongororwe DNA .
Inorapwa sei?
Kune nzira mbiri huru dzekurapa chirwere cheFabry.
1. Kurapa Nekutsiva MaEnzyme (ERT): Iyi ndiyo nzira inonyanya kushandiswa. Izvi zvinosanganisira kupa muviri enzyme isipo kana kuti isiri kushanda zvakanaka kuburikidza nesaline solution. Izvi zvinowanzoitwa muchipatara kana kiriniki kanenge kamwe chete pamavhiki maviri ega ega. Kurapa uku kunomisa kuungana kwemafuta mumuviri uye kunodzora marwadzo nezvimwe zviratidzo.
2. Migalastat (Galafold): Uyu mushonga mutsva unogona kutorwa sepiritsi. Unoshanda nekusimbisa enzyme isiri kushanda zvakanaka uye kuvandudza mashandiro ayo.
Kuwedzera kune aya marapirwo makuru, chiremba wako anogona kukurudzira mamwe marapirwo zvichienderana nezviratidzo zvako.
- Mishonga inouraya marwadzo inokonzerwa nekukuvara kwetsinga.
- Mushonga wematambudziko emudumbu.
- Zvinoderedza ropa kudzivirira kuumbwa kweropa.
- Mishonga yekudzivirira BP neitsvo.
Kana chirwere chacho chakakuvadza itsvo zvakanyanya, dialysis kana kutoisirwa itsvo zvinogona kudiwa.
Miedzo inoongorora mamiriro ako ezvinhu
Panguva yekurapwa, chiremba wako achaita bvunzo dzakasiyana-siyana nguva nenguva kuti aongorore mamiriro ako ezvinhu.
| Bvunzo | Tsananguro iri nyore |
|---|---|
| EKG (Electrocardiogram) | Kuyera mashandiro emagetsi emwoyo, kutarisa kurova kwemoyo uye mutinhimira. |
| Echocardiogram | Kuongororwa kwemoyo neultrasound. Izvi zvinoyera hutano nekushanda kwenhengo dzemoyo. |
| MRI yehuropi | Kuwana mifananidzo yakadzama yehuropi nedzimwe nhengo dzemuviri. |
| Kuongororwa kweCT | Kutora mifananidzo yakadzama yemukati memuviri uchishandisa X-rays. |
| Mimwe miedzo | Kuongororwa kweropa, weti, thyroid, bvunzo dzekunzwa nekuona, bvunzo dzekushanda kwemapapu. |
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheFabry chirwere chinogara nhaka, chinoberekwa nemajini. Hachitapurirani.
- Zviratidzo zvakawanda zvisina hukama zvinogona kuitika pamwe chete, zvakaita sekurwadziwa kwakanyanya mumakumbo, maronda matsvuku paganda, uye kudikitira kushoma.
- Zvinogona kutora nguva kuti chirwere chiongororwe, asi kuongororwa kweropa neDNA kunogona kusimbisa chirwere chacho.
- Kunyange hazvo chirwere ichi chisingarapike zvachose, ikozvino kune mishonga inoshanda (yakadai seERT) inogona kudzora zviratidzo, kudzivirira matambudziko akakomba, uye kubatsira vanhu kurarama hupenyu hwakajairika.
- Usambofa wakarega kurapwa nemiedzo yaunopihwa nachiremba wako. Kugara uchitevera mirairo yachiremba wako kwakakosha zvikuru pahutano hwako hweramangwana.
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