Ake sifunde ngomuthi wokugomela i-Idursulfase onikezwa labo abane-Hunter Syndrome.

Ingabe wena noma othile omaziyo unesifo esingavamile esibizwa ngokuthi i-Hunter Syndrome? Uma kunjalo, kungenzeka ukuthi uke wezwa ngomuthi wokugomela obizwa ngokuthi i-Idursulfase. Igama eliyinkimbinkimbi kancane, kodwa namuhla sizokhuluma ngalo muthi ngendlela elula kakhulu, ngendlela ongayiqonda. Ngoba kubaluleke kakhulu ukuba nolwazi oluhle ngezinto ezinjengalezi.

Uyini lo muthi obizwa ngokuthi i-Idursulfase?

Kalula nje, i-Hunter Syndrome yisimo lapho i-"enzyme" ekhethekile, iphrotheni esiza ngezinqubo zamakhemikhali emzimbeni wethu, ingekho noma ingasebenzi kahle. Le "enzyme" isiza ukubhidliza amanye ama-molecule ayinkimbinkimbi emzimbeni wethu futhi iwenze abe lula, okusho ukuthi angasuswa emzimbeni lapho umsebenzi wawo usuqediwe. Ngakho-ke uma le "enzyme" ingekho, lawo ma-molecule ayinkimbinkimbi aqoqana ezingxenyeni ezahlukene zomzimba, okubangela izinkinga nezimpawu ezahlukahlukene.

I-Idursulfase umuthi owenziwe elabhorethri ukuze ithathe indawo yaleyo enzyme engekho, futhi iyasebenza. Okusho ukuthi, ithatha indawo yaleyo enzyme engekho, noma kunalokho, iyindlela yokwelapha esikhundleni se-enzyme. Kodwa into eyodwa okudingeka uyikhumbule kahle ukuthi lokhu akulona ikhambi eliphelele . Kodwa kungasiza ekulawuleni izimpawu, kulawule ukuwohloka kwesimo, futhi kwenze impilo ibe lula kancane.

Lo muthi ngezinye izikhathi ungasetshenziswa kwezinye izinto, ngakho-ke uma unemibuzo, buza udokotela wakho noma usokhemisi.

Igama lomkhiqizo elivamile lalo muthi yi-`(Elaprase)`.

Yini okufanele uyitshele udokotela wakho ngaphambi kokuthatha lo muthi?

Manje, ngaphambi kokuba uqale ukuthatha lo muthi, kunezinto ezimbalwa okudingeka uzitshele udokotela wakho noma ithimba lakho lokunakekela. Lokhu kwenzelwa ukuthi bakunikeze ukwelashwa okufanele ngokuphephile. Cabanga ngakho njengokwazi kusenesikhathi ukuthi yiziphi izithiyo ozohlangana nazo endleleni.

Nazi izinto okufanele uzaziswe:

• Ingabe unesifo sofuba kanye nomkhuhlane njengamanje?
• Ingabe unesifo senhliziyo? Lokho kusho uhlobo oluthile lwenkinga yenhliziyo.
• Ingabe unesifo samaphaphu? Njengezinkinga zokuphefumula.
• Wake waba nokusabela kokungezwani komzimba ne-Idursulfase, omunye umuthi, ukudla, udayi wokudla, noma izithasiselo? Lokhu kungafaka phakathi amaqhubu, ukulunywa, noma ubunzima bokuphefumula.
• Wake waba nokuvuvukala kolimi, ubuso, noma izindebe, ubunzima bokuphefumula, ubunzima bokugwinya, ukusha, noma ukuqina komphimbo?Ingabe lokho kwake kwenzeka? Lokhu kubaluleke kakhulu, ngoba izinto ezinjalo zingenzeka ngisho noma uthatha lo muthi.
• Ukhulelwe noma unethemba lokukhulelwa?
• Uyancelisa?

Kubaluleke kakhulu ekuphepheni kwakho ukukhuluma ngalezi zinto ngaphandle kokuzifihla.

Uyisebenzisa kanjani le mithi?

Lo muthi unikezwa njengomjovo emthanjeni . Ngokuqondile, "uwukufakwa" kwe-saline, okunikezwa emzimbeni amahora amaningana. Lokhu akuyona into ongayenza ekhaya . Kumelwe unikezwe uchwepheshe wezempilo oqeqeshiwe, njengodokotela noma umhlengikazi, esibhedlela noma emtholampilo.

Uma unikeza izingane lo muthi:

Lo muthi ngezinye izikhathi unganikezwa izingane ezincane ezineminyaka engu-16, kanye nezingane ezincane ezineminyaka engu-1 nezinyanga ezingu-4, uma kunezimo ezithile. Kodwa-ke, kunezinyathelo zokuphepha ezikhethekile. Ngakho-ke, uma unikeza ingane yakho lokhu, kubalulekile ukukhuluma nodokotela wezingane ngokucophelela futhi uthole imininingwane.

Ukweqisa:

Uma ucabanga ukuthi usuthathe lo muthi omningi kakhulu, noma uma usola ukuthi uwuthathile, kufanele ushayele ucingo ngokushesha esikhungweni sokulawula ubuthi noma egumbini lezimo eziphuthumayo esibhedlela esiseduze. Kubaluleke kakhulu ukuthatha isinyathelo ngokushesha.

Inothi elibalulekile: Lo muthi unikezwe wena kuphela. Unganiki omunye umuntu lo muthi nganoma yisiphi isizathu , noma ngabe unezimpawu ezifanayo nawe.

Yini okufanele uyenze uma uphuthelwa umthamo wemithi?

Akuyona into enhle ukweqa umthamo walo muthi. Lo muthi udinga ukuthathwa njalo futhi ngezikhathi ezithile. Uma ungawutholi, imiphumela yokwelashwa ingase yehle. Uma ungakwazi ukuza uzothatha umuthi ngosuku oluhleliwe, qiniseka ukuthi ukhuluma nodokotela wakho noma uchwepheshe wezempilo . Bazokutshela ukuthi wenzeni ngokulandelayo.

Ingabe ezinye izinto zingasebenzisana nalomuthi?

Lo muthi ngokuvamile awutholakali ubangela izinkinga ezinkulu neminye imithi (akulindelekile ukuthi uhlangane). Okusho ukuthi, awuvamile ukusabela neminye imithi.

Kodwa-ke, kungcono ukutshela udokotela wakho ngayo yonke imithi oyithathayo , okuhlanganisa imithi kadokotela, imithi engagunyaziwe, amakhambi, kanye nezithasiselo zokudla. Futhi, tshela udokotela wakho uma ubhema, uphuza utshwala, noma usebenzisa ezinye izidakamizwa ezingekho emthethweni.Uma wenza kanjalo, batshele ngakho futhi, ngoba ezinye izinto zingase zihlangane nomuthi wakho ngandlela thile noma zandise imiphumela emibi.

Yini okufanele ngiyiqaphele lapho ngisebenzisa lo muthi?

Ngesikhathi uthatha lo muthi, kubaluleke kakhulu ukubona udokotela wakho ukuze ahlolwe njalo . Uma izimpawu zakho zingathuthuki noma zibonakala ziba zimbi kakhulu, tshela udokotela wakho. Ungashayi indiva lutho.

Kukhona futhi irejista yeziguli ezine-Hunter Syndrome. Lokhu kubavumela ukuthi baqoqe ulwazi kuwe isikhathi eside, okusho ukuthi bangafunda kabanzi ngalesi sifo. Ungabuza uchwepheshe wakho wezempilo ngolwazi olwengeziwe ngalokhu. Ungajoyina futhi uma unentshisekelo.

Yimiphi imiphumela emibi engaba khona yalo muthi?

Njenganoma yimuphi umuthi, umuthi wokugomela i-Idursulfase ungabangela imiphumela emibi. Eminye yayo iyingozi kakhulu futhi kufanele ibikwe kudokotela wakho ngokushesha. Eminye yayo ijwayelekile futhi izophela ezinsukwini ezimbalwa.

Imiphumela emibi okufanele uyitshele udokotela wakho ngokushesha:

Uma uhlangabezana nanoma yiziphi zalezi zimpawu , kufanele utshele udokotela wakho noma uchwepheshe wezempilo ngokushesha okukhulu. Lezi zingaba izimpawu zesimo esibucayi.

• Ukusabela kokungezwani komzimba, okuhlanganisa ukuqubuka kwesikhumba, ukulunywa noma ukuqubuka, ukuvuvukala kobuso, izindebe, noma ulimi. Lokhu kungenzeka ngesikhathi noma ngemuva nje kokunikezwa umuthi wokugoma.
• Izinkinga zokuphefumula. Ukuzizwa sengathi uyacinana, kufanele uphefumule ngokushesha.
• Ubuhlungu besifuba noma ukuqina.
• Ukuzizwa unesizungu; ukuzizwa ubuthakathaka noma unesizungu; ukuwa ngenxa yokulahlekelwa ibhalansi; ukuzizwa ubuthakathaka noma ukhathele ngendlela engavamile.
• Ukushaya kwenhliziyo okusheshayo, okungajwayelekile.
• Umkhuhlane noma ukubanda. Lokhu kungaba uphawu lokutheleleka.

Imiphumela emibi evame ukungabi mibi kakhulu, kodwa okufanele ibikwe kudokotela wakho uma iqhubeka:

Lezi zinto zivame ukuphela ezinsukwini ezimbalwa. Kodwa uma ziqhubeka, noma uma zikukhathaza, tshela udokotela wakho.

• Ukukhwehlela.
• Uhudo.
• Ukushawa kobuso. Lokhu kusho ukuthi ubuso buba bomvu futhi buzizwe bushisa.
• Ikhanda elibuhlungu.
• Ubuhlungu bemisipha noma amalunga.
• Isicanucanu, ukuhlanza.
• Ukukhathala.

Lolu hlu lungase lungahlanganisi yonke imiphumela emibi engaba khona. Uma ubona noma yini engavamile, shayela udokotela wakho ukuze uthole iseluleko sezokwelapha. Ungabika le miphumela emibi ku-FDA (Food and Drug Administration) e-United States ku-1-800-FDA-1088. ESri Lanka, ungazibika eziphathimandleni zezempilo ezifanele ngodokotela wakho.

Uyigcinaphi le mithi?

Lona futhi umbuzo abantu abaningi abawubuzayo. Awuvunyelwe ukugcina lo muthi we-Idursulfase ekhaya. Usetshenziswa futhi ugcinwe esibhedlela noma emtholampilo kuphela. Isizathu salokhu yindlela onikezwa ngayo kanye nezimo zokushisa ezikhethekile okumele ugcinwe kuzo.

Ekugcineni, inothi elibalulekile

Ingabe lokhu kumane nje kuyisifinyezo salokho esikhulume ngakho? Akuhlanganisi yonke imininingwane. Isimo sawo wonke umuntu sihlukile. Ngakho-ke, uma unemibuzo noma ukukhathazeka ngalo muthi, qiniseka ukuthi ubuza udokotela wakho, usokhemisi, noma omunye umhlinzeki wezempilo. Bangakunikeza ulwazi olunembile kakhulu ngesimo sakho.

Izinto okudingeka uzikhumbule (Umyalezo Wokuya Ekhaya)

Kulungile, ngakho-ke nazi ezinye izinto okudingeka uzikhumbule kulokho esikhulume ngakho:

• I-Idursulfase umuthi osindisa impilo othatha indawo ye-enzyme engekho kubantu abane-Hunter Syndrome.
• Lokhu akulona ikhambi eliphelele , kodwa kusiza ukulawula izimpawu nokuthuthukisa ikhwalithi yokuphila.
• Ngaphambi kokuqala umuthi , kubalulekile ukutshela udokotela wakho ngazo zonke izimo zakho zempilo , ukungezwani komzimba, kanye neminye imithi oyithathayo.
• Lokhu kunikezwa njengokufakwa emthanjeni esibhedlela ngumuntu oqeqeshiwe.
• Ungayeki umthamo womuthi. Uma ungakwazi, tshela udokotela wakho ngokushesha.
• Kungaba nemiphumela emibi kakhulu kanye nemiphumela emibi evamile. Tshela udokotela wakho nganoma yini engavamile, kungakhathaliseki ukuthi incane kangakanani.
• Lomuthi ungowakho wedwa. Ungawuniki omunye umuntu.
• Ungesabi ukubuza udokotela wakho noma yimiphi imibuzo noma ukukhathazeka ongase ube nakho. Unelungelo lokwazi ngempilo yakho.

I- Idursulfase, i-Hunter Syndrome, ukwelashwa kokufaka esikhundleni se-enzyme, i-Elaprase, Imiphumela emibi, Imithi, Izifo ezingavamile