Ingabe uvame ukuba nobuhlungu emhlane namalunga? Ingabe uzizwa uqinile futhi ungakhululekile uma uvuka embhedeni ekuseni? Ungase ucabange ukuthi lokhu kuyinto evamile ehambisana nokukhathala nokuguga. Kodwa akuzona zonke izinhlungu ezivamile. Namuhla sikhuluma ngendaba enjalo. Lena indaba ka-Alicia Graff Mack, umdansi odumile emhlabeni wonke. Lokhu kumayelana nesifo esathinta umsebenzi wakhe wokudansa kakhulu kangangokuthi sammisa, kodwa ekugcineni samqinisa.
'Ngizilolonge njengomdlali we-Olimpiki, kodwa ubuhlungu abuzange buphele'
U-Alicia wayeneminyaka engaba yi-10 ubudala lapho odokotela beqala ukukhipha uketshezi edolweni lakhe. Kusukela ngaleso sikhathi, ubelokhu ehlushwa ubuhlungu iminyaka engaphezu kweyishumi, ehlinzwa kaningi, futhi webiwa isikhathi sakhe esiyigugu njengomdansi ochwepheshe. Kwathatha isikhathi ukuthola ukuthi yini ngempela imbangela yalokhu konke. Lesi sifo yi- Ankylosing Spondylitis (AS) . Kalula nje, yisimo se-arthritis esenzeka lapho amasosha omzimba wethu ehlasela amalunga ethu.
Ngezinye izinsuku amadolo akhe ayevuvukala njengelamula. Wayengakwazi ngisho nokuhamba kahle. Wayengakwazi ngisho nokucabanga ngokudansa egqoke izicathulo ezikhethekile ayezisebenzisa ukudansa.
Kwakunezikhathi eziningi lapho ecabanga, "Ngeke ngiphinde ngibe ngumdansi."
Ngesikhathi esemncane, eqeqeshwa njengomdansi onethalente, wayengazinaki kakhulu lezi zimpawu. Njengoba esho, "Ngaziqeqesha njengomdansi we-Olimpiki. Ngakho-ke kuyinto evamile ukuba nezinhlungu nezinhlungu. Yilokho okwenzeka kubadansi abaningi ngaso sonke isikhathi."
Kodwa izimpawu zakhe zaya ziba zimbi kancane kancane. Ngisho nangemva kokuhlinzwa ngenxa yokudabuka okuncane kwe-cartilage edolweni lakhe kanye nokwelashwa ngokomzimba, ubuhlungu abuzange buphele. Wayengakwazi ngisho nokuhamba aye esiteshini sesitimela ukuze athole ukwelashwa.
"Cishe izinyanga eziyisithupha ngemva kokuhlinzwa, akekho owanginika impendulo. Iphupho lami lonke empilweni yami lalisekelwe empilweni yomzimba wami. Ngangisesimeni esibaluleke kakhulu empilweni yami," kusho yena.
Iyini ngempela i-Ankylosing Spondylitis (AS)?
Kulungile, ake sibone ukuthi lesi simo sibizwa ngokuthi i-AS. Kuyisifo esibangelwa ukuzivikela komzimba . Okusho ukuthi, uhlelo oluvikela imizimba yethu ezifweni luqala ngephutha ukuhlasela amangqamuzana ethu anempilo, ikakhulukazi amalunga.
I-AS ithinta kakhulu amalunga omgogodla. Yingakho kuba nokuqina nobuhlungu emhlane ekuseni. Ngokuhamba kwesikhathi, la malunga angacindezelwa futhi umgogodla ungalahlekelwa ukuguquguquka kwawo. Kodwa akugcini nje ngomgogodla. Kungathinta namanye amalunga emzimbeni, njengamadolo, izinqe, namaqakala. Yilokhu okwenzeka ku-Alicia.
Esinye isizathu esenza kube nzima ukuxilonga lesi sifo ukuthi izimpawu zokuqala zifana kakhulu nobuhlungu obuvamile bomzimba.
| Ubuhlungu obuvela ekuzikhandleni okuvamile | Izimpawu ezingaba khona ze-Ankylosing Spondylitis (AS) |
|---|---|
| Ngokuvamile kuyanda uma usebenza noma uzivocavoca, futhi kuyancipha uma uphumula. | Ubuhlungu nokuqina komzimba kuyaqina uma uphumule, ikakhulukazi ekuseni . Kuyancipha kancane uma uhamba noma uhamba. |
| Ubuhlungu buyahamba, abuhlali busendaweni efanayo. | Ngokuvamile, ubuhlungu buyaqhubeka emhlane ongezansi nasemalungeni ezinqe . |
| Ukuvuvukala kwamalunga akuvamile ukubonakala. | Amalunga anjengamadolo namaqakala angase avuvuke . |
| Akukho mphumela emehlweni noma esifubeni. | Ezinye izimpawu zingase zihlanganise ukubomvu kwamehlo, ubuhlungu (uveitis), kanye nobuhlungu besifuba (ikakhulukazi uma uphefumula kakhulu). |
Impilo yathatha indlela ehlukile, kodwa angizange ngilahle iphupho lami.
Njengoba amaphupho akhe okudansa ephela, u-Alicia waqala ukucabanga ngempilo ehlukile. Wabhalisa eyunivesithi ngenhloso yokuphishekela umsebenzi wokuphatha ubuciko. Phakathi naleso sikhathi, waqhubeka nokuthola ukwelashwa ngokomzimba kanye nemithi. Kancane kancane, umzimba wakhe waba namandla. Ngonyaka wakhe wokugcina eyunivesithi, wakwazi ukubuyela emakilasini okudansa, ngenxa yenjabulo yakhe kuphela.
Ngesikhathi efuna umsebenzi enkampanini enhle ngemva kokuphothula, wayeneholide lasehlobo elilodwa. Waya enkampanini edumile yokudansa eNew York, enethemba lokuthola umsebenzi emnyangweni wokuphatha noma wokumaketha.
Kodwa abasunguli balelo qembu babeneminye imibono. "Sizwile ukuthi uyadansa futhi. Sinohambo e-Italy, futhi omunye wabadansi bethu ube nengozi. Ungasijoyina futhi?"
U-Alicia wayesaba ekuqaleni. Kwase kuphele isikhathi eside engadansa isikhathi esigcwele futhi edlala emakhonsathini. Kodwa lokhu kungaba yithuba lakhe lokugcina. "Ngacabanga, 'Ngizohlala edeskini impilo yami yonke. Ngifuna ukukwenza lokhu ngaphambi kwalokho.'"
Wasebenzisa lelo thuba wabuyela endaweni yokudansa.
Ukuxilongwa okufanele kwenkinga yamehlo
Ngokuhamba kwesikhathi, umbono ka-Alicia waqala ukufiphala, amehlo akhe aba bomvu futhi aba buhlungu. Lesi kwakuyisibonakaliso sokuqala sokuthi une-AS.
Amehlo akhe ayesenesimo esibizwa ngokuthi i-uveitis , ukuvuvukala kweso. Udokotela wakhe wamathambo wachaza ukuthi i-uveitis iyisimo esivamile kubantu abane-AS. Lena yindlela kuphela yokuqinisekisa ukuthi isimo sakhe sasiyi-AS, hhayi i-reactive arthritis.
Ngokuthola ukuxilongwa okufanele, waqala ukwelashwa okwakumfanele. Waqala ukuthatha umuthi wokwelapha amalunga omzimba oguqula izifo (DMARD) njenge- Adalimumab (Humira) . Kodwa kwafika nezinselele ezintsha. “Kwadingeka ngihambe amazwe ngamazwe ngisebenzisa imijovo. Ukuwagcina ebanda ezindizeni zamahora angu-18, ukuhlola ukuthi amahhotela engangihlala kuwo anazo yini iziqandisi, kanye nokuletha imithi ehhotela ngesikhathi… kwakuwumdanso ngokwawo!” esho ehleka.
"Kuyamangalisa, kodwa bengingeke ngibe nokuphila okugcwele kangaka ukube umzimba wami awuzange ungivimbele."
Ngokuphathwa okufanele, wakwazi ukudansa ngobungcweti eminye iminyaka emi-5-6. "Kwakuyisibusiso engangisilindele," usho kanje. Namuhla, uyinhloko nomqondisi womnyango wokudansa eJuilliard School edumile emhlabeni wonke.
"Ngisaphuza i-Humira, futhi uma lesi sifo siqala ukubhebhetheka, ngiphuza imithi efana ne-prednisone," kusho yena. "Izinsuku eziningi umhlane wami nezinqe zami ziqinile impela. Kodwa ngihlala ngisebenza ngangokunokwenzeka."
Umlayezo Wokuya Nawe Ekhaya
U-Alicia unikeza lawa macebiso kulabo abaphila ne-Ankylosing Spondylitis (AS) noma isifo esingamahlalakhona esifanayo:
- Thola udokotela okusekelayo: "Abanye odokotela engaya kubo ekuqaleni babengakholwa ngempela engangikusho. Lokho kwenza konke kwaba nzima," usho kanje. Lesi sifo singavuka noma nini. Ngakho-ke, kubalulekile ukuba nodokotela ongaxhumana naye ngokushesha futhi okuqondayo.
- Yiphathe usuku nosuku: "Lesi akusona isifo esizophela kalula. Udinga ukuthatha umthwalo wemfanelo ngesimo sakho, usebenzisane nodokotela wakho, uthole udokotela omuhle, bese usithatha usuku nosuku."
- Yiba nesineke ngawe: "Ezinye izinsuku zimbi kakhulu. Ngizivumela ukuba ngibe njalo. 'Namuhla usuku olubi. Ngizozivumela ngithukuthele, ngikhale, ngenze noma yini. Kodwa lokho kungokwanamuhla kuphela. Kusasa ngizovuka ngenze okuthile okungenza ngizizwe ngingcono.'"
- Ungabunaki ubuhlungu bakho: Uma unezinhlungu zamalunga zesikhathi eside, ikakhulukazi ukuqina kwasekuseni, ungabuthathi njengento "evamile." Qiniseka ukuthi ubona udokotela ofanelekayo ukuze akunike iseluleko.
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