Ngaba uhlala unentlungu yomqolo namalungu? Ngaba uziva uqinile kwaye ungakhululekanga xa uvuka ebhedini kusasa? Usenokucinga ukuba le yinto eqhelekileyo ehambisana nokudinwa nokwaluphala. Kodwa ayizizo zonke iintlungu eziqhelekileyo. Namhlanje sithetha ngebali elinjalo. Eli libali lika-Alicia Graff Mack, umdanisi odumileyo kwihlabathi liphela. Eli limalunga nesifo esachaphazela umsebenzi wakhe wokudanisa kangangokuba sammisa, kodwa ekugqibeleni samomeleza.
'Ndizilolonge njengomdlali we-Olimpiki, kodwa intlungu ayizange iphele'
UAlicia wayeneminyaka emalunga ne-10 ubudala xa oogqirha kwafuneka bakhuphe ulwelo edolweni lakhe okokuqala. Ukusukela ngoko, ebeneentlungu kangangeminyaka engaphezu kweshumi, enziwe utyando oluninzi, kwaye ixesha lakhe elixabisekileyo njengomdanisi oqeqeshiweyo labiwa. Kwathatha ixesha ukufumanisa ukuba yintoni kanye kanye ebangele konke oku. Esi sifo yi -Ankylosing Spondylitis (AS) . Ngamafutshane, yimeko ye-arthritis eyenzeka xa inkqubo yomzimba wethu yokuzikhusela ihlasela amalungu ethu.
Ngezinye iintsuku amadolo akhe ayedumba njengelamuni. Wayengakwazi nokuhamba kakuhle. Wayengenakukwazi nokuyicinga into yokudanisa enxibe izihlangu ezikhethekileyo awayezisebenzisa xa edanisa.
Kwakukho amaxesha amaninzi awathi wacinga, "Andisayi kuphinda ndibe ngumdanisi."
Xa wayesemncinci, eqeqeshwa njengomdanisi onetalente, wayengazinaki kakhulu ezi mpawu. Njengoko esitsho, "Ndiziqeqeshe njengomdlali we-Olimpiki. Ngoko ke kuqhelekile ukuba neentlungu neentlungu. Yiloo nto eyenzekayo kubaninzi abadanisi ngalo lonke ixesha."
Kodwa iimpawu zakhe zaya zisiba mandundu kancinci kancinci. Nasemva kotyando lokukrazuka okuncinci kwi-cartilage edolweni lakhe kunye nonyango lomzimba, iintlungu azizange ziphele. Wayengakwazi nokuhamba ukuya kwisikhululo sikaloliwe ukuze afumane unyango.
"Kangangeenyanga ezintandathu emva kotyando, akukho mntu wandinika impendulo. Iphupha lam lobomi bonke lalisekelwe kwimpilo yomzimba wam. Ndandingumntu obaluleke kakhulu ebomini bam," utshilo.
Yintoni kanye kanye i-Ankylosing Spondylitis (AS)?
Kulungile, masibone ukuba le meko ibizwa ngokuba yi-AS. Sisifo esibangelwa kukuzimela komzimba . Oko kukuthi, inkqubo ekhusela imizimba yethu kwizifo ngempazamo iqala ukuhlasela iiseli zethu eziphilileyo, ingakumbi amalungu.
I-AS ichaphazela kakhulu amalungu omqolo. Yiyo loo nto kukho ukuqina kunye nentlungu emqolo kusasa. Ekuhambeni kwexesha, la malungu anokucinezelwa kwaye umqolo unokulahlekelwa bukuguquguquka kwawo. Kodwa akupheleli nje kumqolo. Ingachaphazela namanye amalungu emzimbeni, njengamadolo, izinqe, kunye namaqatha. Oku kwenzeka kuAlicia.
Esinye isizathu sokuba kube nzima ukuxilonga esi sifo kukuba iimpawu zokuqala zifana kakhulu neentlungu zomzimba eziqhelekileyo.
| Intlungu evela ekusebenzeni rhoqo | Iimpawu ezinokwenzeka ze-Ankylosing Spondylitis (AS) |
|---|---|
| Idla ngokwanda xa usebenza okanye uzilolonga, ize inciphe xa uphumla. | Intlungu nokuqina kwayo kuya kuba mandundu xa uphumle, ingakumbi kusasa . Iyathomalalisa kancinci xa uhamba okanye uhamba. |
| Intlungu iyahambahamba, ayisoloko ikwindawo enye. | Intlungu ihlala iqhubeka kumqolo ongezantsi kunye namalungu esinqe . |
| Ukudumba kwamalungu akuqhelekanga ukubonwa. | Amalungu afana namadolo namaqatha anokudumba . |
| Akukho mpembelelo emehlweni okanye esifubeni. | Ezinye iimpawu zingabandakanya ukubomvu kwamehlo, iintlungu (uveitis), kunye nentlungu yesifuba (ingakumbi xa uphefumla nzulu). |
Ubomi buthathe indlela eyahlukileyo, kodwa andizange ndililahle iphupha lam.
Njengoko amaphupha akhe okudanisa ayephela, uAlicia waqala ukucinga ngobomi obahlukileyo. Wabhalisa eyunivesithi ngenjongo yokulandela umsebenzi wolawulo lwezobugcisa. Okwangoku, waqhubeka efumana unyango lwe-physiotherapy kunye namayeza. Kancinci kancinci, umzimba wakhe waba namandla. Kunyaka wakhe wokugqibela eyunivesithi, wakwazi ukubuyela kwiiklasi zokudanisa, ukuze nje aneliseke.
Ngelixa wayefuna umsebenzi kwinkampani elungileyo emva kokugqiba izifundo zakhe, wayenekhefu lasehlotyeni elinye. Waya kwinkampani yomdaniso edumileyo eNew York, enethemba lokufumana umsebenzi kwisebe lolawulo okanye lokuthengisa.
Kodwa abasunguli beli qela babenezinye izimvo. "Sivile ukuba uyadansa kwakhona. Sinohambo e-Itali, kwaye omnye wabadanisi bethu ufumene ingozi. Ungasijoyina kwakhona?"
Ekuqaleni uAlicia wayesoyika. Kwakusele kudlule ixesha elide engasadanisi ixesha elizeleyo kwaye edlala kwiikonsathi. Kodwa eli lisenokuba lithuba lakhe lokugqibela. "Ndacinga, 'Ndiza kuhlala edesikeni ubomi bam bonke. Ndifuna ukwenza oku ngaphambi koko.'"
Wasebenzisa elo thuba waza wabuyela kwindawo yokudanisa.
Ukuxilongwa ngokuchanekileyo kwengxaki yamehlo
Ekuhambeni kwexesha, umbono ka-Alicia waqala ukufiphala, amehlo akhe aba bomvu kwaye ebuhlungu. Olu yayiluphawu lokuqala lokuba une-AS.
Amehlo akhe ayenemeko ebizwa ngokuba yi -uveitis , ukudumba kweliso. Ingcali yakhe yezifo zamathambo yamchazela ukuba i-uveitis yimeko eqhelekileyo kubantu abane-AS. Le yayiyeyona ndlela yokuqinisekisa ukuba imeko yakhe yayiyi-AS, hayi i-reactive arthritis.
Emva kokuba efumene isifo esifanelekileyo, waqalisa unyango olwalumlungele. Waqala ukuthatha iyeza lokunciphisa isifo samathambo (DMARD) elifana ne -Adalimumab (Humira) . Kodwa kwafika imingeni emitsha. “Kwakufuneka ndihambe ukusuka kwelinye ilizwe ukuya kwelinye ndiphethe iisirinji zenaliti. Ukuzigcina zibanda kwiinqwelomoya zeeyure ezili-18, ukujonga ukuba iihotele endandihlala kuzo zazineefriji na, kunye nokuzisa amayeza ehotele ngexesha… yayiyinto yokudanisa ngokwayo!” utsho ehleka.
"Kuyamangalisa, kodwa bendingenakuze ndibe nobomi obupheleleyo kangaka ukuba umzimba wam ubungandivimbanga."
Ngonyango olufanelekileyo, wakwazi ukudanisa ngobungcali eminye iminyaka emi-5-6. “Yayiyintsikelelo endandingayilindelanga,” utshilo. Namhlanje, uyintloko nomlawuli wecandelo lomdaniso kwiJuilliard School edumileyo kwihlabathi liphela.
“Ndisasebenzisa iHumira, kwaye xa isifo siqala ukukhula, ndisebenzisa amayeza afana ne-prednisone,” utshilo. “Iintsuku ezininzi umqolo wam kunye nezinqe ziqinile kakhulu. Kodwa ndihlala ndisebenza kangangoko ndinako.”
Umyalezo Wokuya Ekhaya
UAlicia unika la macebiso kwabo baphila ne-Ankylosing Spondylitis (AS) okanye isifo esingapheliyo esifanayo:
- Fumana ugqirha okuxhasayo: "Abanye oogqirha endaya kubo ekuqaleni babengakholelwa ngokwenene kwinto endandiyithetha. Oko kwenza yonke into yaba nzima," utshilo. Esi sifo sinokuvela nangaliphi na ixesha. Ngoko ke, kubalulekile ukuba nogqirha onokumfikelela ngokukhawuleza kwaye okuqondayo.
- Yilawule imihla ngemihla: "Esi asisosifo esiza kuphela lula. Kufuneka uthwale uxanduva ngemeko yakho, usebenzisane nogqirha wakho, ufumane ugqirha olungileyo, kwaye uyisebenzise imihla ngemihla."
- Yiba nomonde kuwe: "Ezinye iintsuku zimbi kakhulu. Ndizivumela ukuba ndibe njalo. 'Namhlanje lusuku olubi. Ndiza kuzivumela ukuba ndicaphuke, ndilile, ndenze nantoni na. Kodwa oko kunamhlanje nje. Ngomso ndiza kuvuka ndenze into endenza ndizive ndingcono.'"
- Musa ukuyityeshela intlungu yakho: Ukuba unentlungu yamalungu ehlala ixesha elide, ingakumbi ukuqina kwamalungu kusasa, musa ukuyithatha njengento "eqhelekileyo." Qiniseka ukuba ubona ugqirha ofanelekileyo ukuze akunike ingcebiso.
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