Unowanzova nemarwadzo emusana nemajoini here? Unonzwa kuomarara uye kusagadzikana paunomuka mangwanani here? Ungafunga kuti ichi chinhu chakajairika chinouya nekuneta nekukwegura. Asi haasi marwadzo ese akajairika. Nhasi tiri kutaura nezvenyaya yakadaro. Iyi inyaya yaAlicia Graff Mack, mutambi ane mukurumbira pasi rose. Iyi inyaya yechirwere chakakanganisa basa rake rekutamba zvekuti chakamumisa, asi pakupedzisira chakamusimbisa.
'Ndakadzidzira semutambi weOlympic, asi kurwadziwa hakuna kupera'
Alicia aive nemakore angangoita gumi apo vanachiremba vakatanga kubvisa mvura kubva mubvi rake. Kubva ipapo, ave achirwadziwa kwemakore anopfuura gumi, akavhiyiwa kakawanda, uye akabiwa nguva yake inokosha semutambi wenyanzvi. Zvakatora nguva kuti azive kuti chii chaizvo chakakonzera zvese izvi. Chirwere ichi chinonzi Ankylosing Spondylitis (AS) . Zvichitaurwa zviri nyore, chirwere chearthritis chinoitika kana masoja emuviri wedu achirwisa majoini edu.
Mamwe mazuva mabvi ake aizvimba seremoni. Aisatombogona kufamba zvakanaka. Aisatombogona kufungidzira kutamba akapfeka shangu dzaaishandisa pakutamba.
Paiva nenguva dzisingaverengeki dzaaifunga, "Handichazombovi mutambi zvakare."
Paaiva mudiki, achidzidzira semutambi ane tarenda, haana kunyanya kutarisisa zviratidzo izvi. Sezvaanotaura, "Ndakadzidzira semutambi weOlympian. Saka zvakajairika kuva nemarwadzo. Ndizvo zvinoitika kune vazhinji vanotamba nguva dzese."
Asi zviratidzo zvake zvakawedzera zvishoma nezvishoma. Kunyangwe mushure mekuvhiyiwa kwekubvaruka kudiki kwegwara remabvi ake uye kurapwa kwemuviri, kurwadziwa hakuna kupera. Aisakwanisa kunyange kufamba kuenda kuchiteshi chechitima chepasi pevhu kuti anorapwa.
"Kwemwedzi mitanhatu mushure mekuvhiyiwa, hapana akakwanisa kundipa mhinduro. Hope dzangu dzese dzaive dzakavakirwa pahutano hwemuviri wangu. Ndaiva pasi pehupenyu hwangu," anodaro.
Chii chinonzi Ankylosing Spondylitis (AS) chaizvo?
Zvakanaka, ngationei kuti chirwere ichi chinonzi AS chii. Chirwere che autoimmune . Kureva kuti, sisitimu inodzivirira miviri yedu kubva kuzvirwere inotanga kurwisa masero edu ane hutano, kunyanya majoini.
AS inonyanya kukanganisa majoini emusana. Ndosaka paine kuomarara uye kurwadziwa kumusana mangwanani. Nekufamba kwenguva, majoini aya anogona kumanikidzwa uye musana unogona kurasikirwa nekuchinjika kwawo. Asi hazvigumiri kumusana chete. Zvinogonawo kukanganisa mamwe majoini mumuviri, akadai semabvi, chiuno, nemakumbo. Izvi ndizvo zvakaitika kuna Alicia.
Chimwe chikonzero chinoita kuti chirwere ichi chiome kuona ndechekuti zviratidzo zvekutanga zvakafanana nekurwadziwa kwemuviri kwakajairika.
| Marwadzo anobva pakushanda nesimba kwakajairika | Zviratidzo zvinogona kuitika zveAnkylosing Spondylitis (AS) |
|---|---|
| Kazhinji inowedzera paunoshanda kana kurovedza muviri, uye inoderera paunozorora. | Marwadzo nekuomarara kunowedzera kana munhu ambozorora, kunyanya mangwanani . Zvinodzikira zvishoma kana achifamba kana kufamba. |
| Marwadzo acho anotenderera, haasi nguva dzose ari panzvimbo imwe chete. | Kazhinji, marwadzo anoramba aripo mumusana wepazasi nemuhudyu . |
| Kuzvimba kwemajoini hakuwanzoonekwa. | Mapfundo akadai semabvi nemakumbo anogona kuzvimba . |
| Hapana chinokanganisa maziso kana chipfuva. | Zvimwe zviratidzo zvinogona kusanganisira kutsvuka kwemaziso, kurwadziwa (uveitis), uye kurwadziwa pachipfuva (kunyanya kana uchifema zvakadzika). |
Hupenyu hwakatora nzira yakasiyana, asi handina kurega kurota kwangu.
Zviroto zvake zvekutamba pazvakapera, Alicia akatanga kufunga nezvehupenyu hwakasiyana. Akanyoresa kuyunivhesiti aine chinangwa chekutsvaga basa rekutungamira zvehunyanzvi. Panguva iyi, akaramba achiwana physiotherapy uye mishonga. Zvishoma nezvishoma, muviri wake wakasimba. Pakazosvika gore rake rekupedzisira kuyunivhesiti, akakwanisa kudzokera kumakirasi ekutamba, nekuda kwekungonakidzwa kwake chete.
Paakanga achitsvaga basa pakambani yakanaka mushure mekupedza kudzidza, akanga ava nezororo rezhizha rimwe chete. Akataura nekambani yekutamba ine mukurumbira muNew York, achitarisira kuwana basa mudhipatimendi rekutonga kana rekushambadzira.
Asi vakatanga boka iroro vaive nepfungwa dzakasiyana. "Takanzwa kuti uri kutamba zvakare. Tine rwendo rwekuItaly, uye mumwe wevatambi vedu aita tsaona. Munogona kutibatana zvakare here?"
Pakutanga Alicia aitya. Kwakanga kwatora nguva yakareba kubva paakatamba nguva yakazara uye achitamba mumakonzati. Asi uyu ungangove mukana wake wekupedzisira. "Ndakafunga kuti, 'Ndichagara padhesiki kweupenyu hwangu hwese. Ndinoda kuita izvi zvisati zvaitika.'"
Akashandisa mukana iwoyo ndokudzokera kunhandare yekutamba.
Kuongororwa kwechokwadi kwedambudziko remaziso
Nekufamba kwenguva, Alicia akatanga kuona zvisizvo, maziso ake akatsvuka uye achirwadza. Ichi ndicho chaive chiratidzo chekutanga chekuti aive neAS.
Maziso ake akanga aita chirwere chinonzi uveitis , kuzvimba kweziso. Chiremba wake wezvemapfupa akatsanangura kuti uveitis chirwere chinowanzoitika kuvanhu vane AS. Iyi ndiyo chete nzira yekusimbisa kuti chirwere chake chaive AS, kwete reactive arthritis.
Nekuongororwa kwakakodzera, akatanga kurapwa kwakamukodzera. Akatanga kutora mushonga unogadzirisa zvirwere (DMARD) wakaita seAdalimumab (Humira) . Asi matambudziko matsva akauya nawo. "Ndaifanira kufamba kubva kunyika kuenda kune imwe nyika nemajekiseni ejekiseni. Kuachengetedza achitonhora parwendo rwendege rwemaawa gumi nemasere, kutarisa kana mahotera andaigara maiva nemafiriji, uye kuendesa mishonga kuhotera nenguva ... kwaive kutamba pachako!" anodaro achiseka.
"Zvinoshamisa, asi ndingadai ndisina kumbova nehupenyu hwakakwana kudai muviri wangu usina kundimisa."
Nekurapwa kwakakodzera, akakwanisa kutamba zvine hunyanzvi kwemamwe makore mashanu kusvika matanhatu. "Yaiva chikomborero chandisina kumbotarisira," anodaro. Nhasi, ndiye mukuru uye mutungamiriri wedhipatimendi rekutamba paJuilliard School ine mukurumbira pasi rose.
"Ndichiri kutora Humira, uye kana chirwere chacho chikatanga, ndinotora mushonga wakaita seprednisone," anodaro. "Mazuva mazhinji musana wangu nehudyu zvinooma. Asi ndiri kuramba ndichiita zvese zvandinogona."
Mharidzo Yekuenda Nayo Kumba
Alicia anopa mazano aya kune avo vanorarama neAnkylosing Spondylitis (AS) kana chirwere chisingaperi chakafanana:
- Tsvaga chiremba anokutsigira: "Vamwe vanachiremba vandakaenda kwavari pakutanga havana kunyatsotenda zvandaitaura. Izvozvo zvakaita kuti zvinhu zviome," anodaro. Chirwere ichi chinogona kukura chero nguva. Saka, zvakakosha kuva nachiremba waunogona kutaura naye nekukurumidza uye anokunzwisisa.
- Gadzirisa zuva nezuva: "Ichi hachisi chirwere chinopera nyore nyore. Unofanira kutora mutoro wechirwere chako, kushanda nachiremba wako, kutsvaga chiremba akanaka, uye kuchitora zuva nezuva."
- Iva nemoyo murefu newe pachako: "Mamwe mazuva akaipa chaizvo. Ndinozvipa mvumo yekuti ndive. 'Nhasi izuva rakaipa. Ndichazvirega ndichitsamwa, ndichichema, ndichiita chero chii zvacho. Asi izvozvo ndezvezuva ranhasi chete. Mangwana ndichamuka ndoita chimwe chinhu chinondiita kuti ndinzwe zviri nani.'"
- Usaregeredza kurwadziwa kwako: Kana uine kurwadziwa kwemajoini kwenguva refu, kunyanya kuomarara kwemangwanani, usazviti "zvakajairika." Iva nechokwadi chekuona chiremba ane hunyanzvi kuti akupe mazano.
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