Isiguli se-MS sincoma ukuvula nokukhuluma ngesimo “esingabonakali” ukuze sinqobe ukukhathazeka nokuzihlukanisa

U-Asmaa Al-Ali, isakhamuzi sase-Emirati, ucela iziguli ze-MS e-UAE ukuthi zikhulume ngempilo yazo, ukuze zisize ukunqoba imizwa yokukhathazeka nesizungu, futhi zizibonise kanye nabanye ukuthi azizodwa.

Ucingo luka-Asmaa lufika ngaphambi koSuku Lomhlaba Lwe-MS e... Meyi 30.

U-Asmaa, isiguli saseCleveland Clinic e-Abu Dhabi, eyingxenye ye-Mubadala Healthcare, uthi: “Ngatholakala ngine-MS eminyakeni eyisishiyagalolunye edlule, futhi kusukela lapho, ngizamile ukungacabangi ngakho kodwa ngiphile impilo yami nje. Nokho, ukuba ne-multiple sclerosis kungase kusenze isiguli sizizwe sinesizungu noma sesaba ngezinye izikhathi; Kodwa ikhono lesiguli lokukhuluma ngesifo saso nomuntu osiqondayo lingasisiza kakhulu.”

“Kunokuvuleleka okukhulu ngesifo sikashukela, noma umfutho wegazi, kodwa i-MS ‘isifo esingabonakali’; Lokhu kwenza kube nzima ukuhlangana neziguli ezinaso, noma zifune ukukhuluma ngayo.”

Ngemva kokutholakala ukuthi une-MS ngo-2012, u-Asma waqala uhambo lwakhe enenkinga yokubona esweni lakhe langakwesokunxele. Inkinga yaqala njengobuthakathaka obuncane embonweni, futhi ngokushesha yakhula yaba ukufiphala okukhulu kakhulu. Ekhathazekile ngalokhu, u-Asmaa wavakashela isibhedlela sendawo e-Dubai, lapho odokotela benza khona i-MRI scan, eyabonisa amabala ebuchosheni bakhe ahambisana ne-MS.

U-Asma uthi: "Lapho udokotela wami eqala ukungitshela ukuthi ngine-sclerosis I-Neuromuscular, ngangingazi ukuthi ngenzenjani. Ngaqala ukuphequlula ngakho ku-inthanethi, kodwa nganquma ukungakuthatheli phezulu engikufundayo. Konke kwenzeka ngesizathu futhi ngacabanga ukuthi ngizophila kahle ngomuthi, ngiyazama ukuthi ngingabanjwa yilesi sifo, ngoba lokho kungase kwesabe kakhulu, futhi angifuni ukuzikhathaza. Kunohlelo lwe-TV lapho umlingiswa ebhala phansi idayari yakhe, ukuze akwazi ukulandelela akwenzile, uma kwenzeka i-MS yakhe imenza alahlekelwe yinkumbulo. Angikwazi ukuziphoqa ukuthi ngibukele lolu hlelo, ngoba okunye okungesaba kakhulu ukuthi angikhumbuli kahle impilo yami.”

Eminyakeni embalwa eyalandela, u-Asmaa walandelana nodokotela njalo ukuze baqaphe intuthuko yakhe. Nakuba ayenezimpawu ezimbalwa kakhulu, ukuhlolwa kodokotela odokotela kwabonisa ukukhula kwamagciwane ebuchosheni bakhe nomgogodla. NgoZibandlela wezi-2020, u-Asma wanquma ukuvakashela eCleveland Clinic e-Abu Dhabi ukuze abonane nodokotela.

"Lapho u-Asmaa engena ehhovisi lami okokuqala, asizange sibe nengxoxo ende nge-MS kuphela, kodwa nangempilo yakhe nezinhlelo zakhe," kusho uDkt. Anu Jacob, MD, onguchwepheshe wezinzwa kanye nomqondisi we-MS ku-Neurological Institute eCleveland Clinic Abu. Dhabi. Ngekusasa, amathemba akhe nokwesaba kwakhe. Sikhulume ngakho konke okucatshangwa yintombi elingana nayo. U-Asmaa waqhubeka ehlushwa yizindawo ezikhulayo zokuvuvukala ebuchosheni bakhe, naphezu kwemithi ayeyidla. Ngemva kokuxoxisana naye ngezinketho zakhe zokwelapha, sanquma ukuqala ukuthola ukwelashwa okusha, esimnikeza khona lapha, kanye njalo ezinyangeni eziyisithupha.”

Ukushintsha kuka-Asmaa kusukela ekutholeni imithamo yemithi kabili ngosuku kuya ekutholeni imijovo kabili ngonyaka kwaholela ekushintsheni empilweni ka-Asma kanye nendlela eyathathwa ekunakekeleni kwakhe.

U-Asma uthi: "Ngangiphuza amaphilisi ngezikhathi eziqine kakhulu, futhi ngezinye izikhathi ayeba nemiphumela emibi. Ngaso sonke isikhathi ngangihlela izikhathi zami zokuvuka, izikhathi zami zokudla, ukuze zihambisane nezikhathi zemithi yami, futhi ngezinye izikhathi ngangizikhohlwa lezo zikhathi. Lokhu kukodwa kukwenza uhlale ukhumbula ukuthi uphila nalesi sifo. Ukungadingi ukubhekana nalokho kungisiza ngempela ukuthi ngigxile empilweni yami hhayi i-MS yami. "

Ngemva kokushintsha imithi yakhe nokuthola imijovo yakhe yokuqala esibhedlela, u-Asma waqhubeka nokuvakasha kwakhe kokulandelela nethimba lakhe lezokwelapha kanye nezikena ze-MRI zokuqapha ukuvuvukala. Ezinyangeni ezimbalwa ezalandela, ukuhlolwa kokulandelela kwabonisa ukuthi isimo sakhe sase sizinzile.

UDkt. Jacob uyaqhubeka: “Nakuba u-Asmaa ebesesimweni esihle futhi enezimpawu ezimbalwa kakhulu phakathi neminyaka edlule, kuvamile ukuba i-MS ibe nokuvuvukala ezindaweni ezithile zobuchopho, noma umgogodla, okungabonisi zimpawu noma Iziguli ziyakuqaphela. . Ngaphandle kokuqapha okufanele, lezi zindawo [zokuvuvukala] ezinganakiwe zingakheka futhi, ngokuhamba kwesikhathi, ziholele ekukhubazekeni - futhi lokhu ngokuvamile kungathatha iminyaka eminingi ukukhombisa imiphumela yako. Lapho ngibona u-Asmaa, ngiyazi ukuthi uma singangeni ukuze simnikeze ukwelashwa okufanele manje, isimo sakhe singase sihluke ngokuphelele eminyakeni engu-15. Ukwazi lokhu kanye nesifiso sami sokukuvimba kuyinto ebaluleke kakhulu engiholayo ekwelapheni kwami ​​i-Asmaa.”

Ngokuqondene nekusasa, u-Asmaa ubheke ngabomvu ekwazini abanye abantu abane-MS abahlala ezweni, ukuze bashintshisane ngolwazi nokuqinisa ubudlelwane bomphakathi nabo.

U-Asmaa uphetha ngokuthi, “Ingxoxo yami noDkt. Jacob yayimnandi kakhulu. Kwaba sengathi ungudokotela wokuqala owangibandakanya ekunakekelweni kwami ​​kwezokwelapha. Lapho udokotela wami enginikeza iseluleko esifanele, lapho nginomuntu engikhuluma naye, ngiye ngathola umuntu osiza ngempela futhi ngizizwa sengathi ngithole ukwesekwa okukhulu. [Ngingathanda ukuhlangana nabanye abane-MS; Kodwa kuze kube manje, ngisahlangane nesiguli esisodwa kuphela, futhi ngicabanga ukuthi ukube besike sakhuluma futhi sabelana ngokuhlangenwe nakho kwethu ngaleli cala, besingakwazi ukusizana.”