I-Q + A neJill Osborne, uMsunguli & I-CEO ye-Interstitial Cystitis Network
Okulandelayo kuvela engxoxweni noJill Osborne, uMsunguli & CEO we-Interstitial Cystitis Network:
Q: Ngicela ungitshele ngemvelaphi yakho nesithakazelo ku-Interstitial Cystitis (IC).
A: Ngiyinto ejwayelekile kakhulu yeziguli ze-IC. Ngangineminyaka engu-32 lapho izimpawu zami ziqala. Izikhathi eziningana ngenyanga, ngathola ubuhlungu obukhulu besisu, ukungakhululeki, nesidingo sokuvuthwa njalo , ikakhulukazi ebusuku.
Kodwa nakuba ngokuqinisekile bekuzizwa sengathi isifo , amabhaktheriya awazange atholakale emcinini wami.
Kwathatha isikhathi esingaphezu konyaka ukuthola i-IC yami. Ehlobo lika-1993, ngangingakwazi ukuhamba ngingazungeze ibhokisi ngaphandle kokukhala. Ukushayela kwakunzima kakhulu, umsebenzi wawungenakwenzeka, futhi mina (njengabanye abagulayo base-IC) ngathola ubuhlungu obungenakwenzeka. Nakuba nginomuthi omuhle kakhulu we- urologist , ngangizizwa ngingedwa futhi ngedwa. Ngolunye usuku, ngikhulume nesinye isiguli se-IC ngocingo. Ngokokuqala ngqa, ngangizwa sengathi othile uqonda ngempela isimo sami. Ngafunda amasu amaningana okuzisiza kanye nokwelapha okuvamile okwagcina nginika ukukhululeka okukhulu. Ngaphezu kwakho konke, nganikwa isipho sethemba.
Ngaqala iqembu lami lokuqala lokusekela le-IC nje kwezinyanga ezintathu ngemva kokuxilongwa futhi ngisihlalo somhlangano wokuqala wezokwelapha we-IC ngonyaka owodwa. Ngo-1994, saqaphela isidingo sokuletha ukusekelwa ngqo emakhaya nasemahhovisi alabo abangakwazi ukuya emihlanganweni yendawo, ngakho-ke ukusungulwa kwethu kwesifo sokuqala kwesibindi namaqembu asekela IC ku-AOL.
Ngo-1995, sathuthuka kuwebhu ebanzi emhlabeni wonke ngokudala iwebhusayithi ye-Interstitial Cystitis Network ngenhloso yokunikeza usizo kanye nokwaziswa ezigulini, umtapo wolwazi olunzulu we-intanethi, kanye nezinsiza zomtholampilo zodokotela (konke kungabizi kubahlanganyeli bethu). Ngo-Spring 1998, i-ICN yasungulwa njengenkampani yokuqala yokushicilela isiguli esinikezelwe i-IC.
Manje sikhonza iziguli ezingaba ngu-10 000 emazweni angu-16.
Q: Yini eyenza IC?
A: Naphezu kwezinkulungwane zemibhalo ye-syndrome yesibindi (manje ebizwa nge-IC), kanye nokutholakala ukuthi kuthinteka kokubili amadoda nabantwana, i-IC yayibhalwe ngokudabukisayo isifo se-hysterical yabesifazane ngawo-1950 lapho abacwaningi bephakamisa ukuthi owesifazane owake waba ngaphansi kokunakekelwa kwezokwelapha nge-IC enamandla kungenzeka ukuthi "ukuphikisana nokuhlukunyezwa kwabazali ababalwe ngezikhwebu ngezimpawu zesisu kusukela ebuntwaneni." Ngisho nanamuhla, ezinye iziguli zihlangana nodokotela abakholelwa ukuthi akukho ukwelashwa kwe-IC ngaphandle kokudluliselwa kokuhlolwa kwengqondo.
Kwaze kwafika ngo-1987 ukuthi ama-National National Institutes of Health e-United States aqoqa umhlangano wawo wokuqala ohleliwe ku-IC, ebeka incazelo yesifo futhi aqalise inkambo yokucwaninga esikhathini esizayo. Abacwaningi manje bakholelwa ukuthi i-IC ingaba nemvelaphi eminingana, kuhlanganise nokuthakazelisa (okukwazi ukunamathela kumathambo futhi kungatholakali ukutheleleka okujwayelekile), ukuphazamiseka koqweqwe lwe-GAG eludongeni lwesibindi, ukubandakanyeka kwamasitomu okungenasisindo nokuvuvukala kwe-neurogenic. Akukho ukuvumelana ngalesi sikhathi ngenxa ye-IC futhi abaningi bakholelwa ukuthi kuyisifo, mhlawumbe ngezizinda ezihlukahlukene.
Q: Ziyini izimpawu ze-Cystitis yama-interstitial?
A: Iziguli ze-IC zingathola noma iyiphi inhlanganisela yemvamisa ye-urinary (izikhathi ezingaphezu kwesishiyagalombili ngosuku), ukuphuthuma komchamo, kanye / noma ubuhlungu besilisa. Ukuze izinhloso zokuxilonga, udokotela angenza futhi i-hydrodistention ukuze abheke amaphuzu amancane okuphazamiseka okutholakala ezigulini zeziguli ze-IC, okuthiwa i-glomerulations.
Iziguli ze-IC zingase zithole isidingo sokuvuthwa njalo ebusuku ( nocturia ), ukungathandeki ngocansi, nobunzima ukuhlala noma ukushayela imoto. Iziguli ze-IC zingabuye zibe namandla okunciphisa isisindo kanye / noma ukuzwela ekudleni (njengejamu le-cranberry, i-acids, utshwala, ushokoledi, i-citrus, nokuningi).
Ungavame ukubona isiguli se-IC ngesidingo sabo njalo sokusebenzisa indlu yokudlela, ikakhulukazi ngenkathi ushayela amabanga amade.
Q: I-IC ihluke kanjani kwezinye izifo zesibindi?
A: Ahhh ... lo ngumbuzo we-$ 10,000. Kumele ukhumbule ukuthi isisindo singakwazi ukukhuluma ulimi olulodwa kuphela, lokho okubuhlungu, imvamisa, noma ukuphuthuma. Ngakho-ke naphezu kwesimo noma ukuhlukunyezwa, iziguli zesibindi zingase zibone izimpawu ezifanayo.
Iziguli ze-prostatitis, isibonelo, ngokuvamile zizwa ubuhlungu be-perineal , imvamisa, ukunciphisa umchamo we-urine, futhi okungenzeka ukungabi namandla nokungabikho ubuhlungu ngaphambi, ngesikhathi noma ngemva kokukhipha .
Iziguli ze-urethritis zingathola imvamisa, ukuphuthuma, noma ubuhlungu ngisho noma kubonakala sengathi ukuvuvukala nje kwe-urethra. I-urethritis ingabangela ukutheleleka noma ukuzwela izinsipho, i-spermicides, imikhiqizo yokugeza noma ama-douches. Iziguli zivame ukukhononda ngokuzwakalayo ngokuhlunguphaza, ngezinye izikhathi ngesikhathi sokuchama.
I-urethral syndrome yinye inkulumo ye-vestibule ye-nebulous. Odokotela abavumelani nencazelo ye-urethral syndrome. Ngokuyinhloko, kubonakala sengathi isetshenziselwa iziguli ezingaba nemvamisa noma ukuphuthumayo, kodwa kungekho ukutheleleka okutholiwe.
I-Trigonitis yisinye isifo esinezibonakaliso ezifanayo ze-IC (imvamisa, ukuphuthuma, i / noma ubuhlungu). I-Trigonitis isetshenziswa uma odokotela beqaphela ukuthi i-trigone isisindo sinokubukeka okunjengokubonakala kwe-cobblestone. Abanye odokotela baphikisana ne-trigonitis njengesifo ngoba bakholelwa ukuthi i-trigone ngokwemvelo ibheka ngaleyo ndlela.
Iziguli zesifo se- vestiva ezingasebenzi zingase zibe nemvamisa, ukuphuthuma, neziqephu ze-incontinence.
Lesi sifo sikholwa ukuthi siyinkimbinkimbi yegazi. Ibizwa ngokuthi i-detrusor hyperreflexia lapho kubonakala imbangela ye-neurological, futhi i-detrusor ukungazinzeki lapho kungekho okungajwayelekile kwe-neurologic.
I-cystitis ye-interstiti, i- syndrome ebuhlungu yesikhumba , kanye nesifo se- frequency-urgency-dysuria syndrome isetshenziselwa ngokungafaniyo ukuchaza imvamisa ye-urinary, ukuphuthuma, kanye / noma ukuzwa ubuhlungu noma ukucindezelwa okuzungeza isisindo, i-pelvis, ne-perineum.
Emibuthanweni yesiguli nesiguli, sivame ukukhathazeka okuningi ngokuphatha izidakamizwa kunokudabukisa noma ukuphikisana ngegama elithi lesi sifo. Uma isiguli singathandeki, badinga usizo ngaphandle kwegama layo.
Q: Utholakala kanjani i-IC?
I-A: Iziguli ze-IC zitholwa ukuthi zihlaziywa ngamaphethini abo okuvota, izimpawu zabo, nokuqedwa kwezifo.
Esimweni esihle kunazo zonke, iziguli ezisolakala ukuthi ziyi-IC zigcwalisa idayari yokuzivocavoca esikhathini esizovumela obabili isiguli nodokotela ukuba babone amaphethini wokuvota, imiqulu ye-urine namazinga abuhlungu. Uma kutholakala ukuthi kutholakala ukuxilongwa, udokotela angase akhethe ukwenza ezinye izivivinyo zokuhlola ukulawula ezinye izifo. Uma lezi zivivinyo ziphuma zingalungile futhi udokotela ephikisa kakhulu ukuba khona kwe-IC, bangakhetha ukwenza i-hydrodistention. Ngokususa isambiso ngamanzi, khona-ke bangabuka izindonga zesibindi ngenxa yesifo se-petechial (glomerulations) esitholakala ezigulini eziningi ze-IC. Ezinye izinqubo ezintsha zokuhlola ukuhlolwa zicwaningwa njengamanje.
Q: Iyiphi imithi ye-IC?
A: Eminyakeni kusukela ngomhlangano wokuqala ohleliwe ku-IC ngo-1987, ososayensi baye bahlola okuningi okungenzeka futhi, kwezinye izimo, ukwelashwa okuphikisanayo.
Ngeshwa, akukho ukwelashwa owodwa okwamanje ongasungulwa njenge "ukwelashwa" kwe-IC. Ngakho-ke, kubalulekile ukuqonda ukuthi iziningi zokwelashwa zenzelwe ukunciphisa izimpawu kunokusindisa izifo.
I-IC yokwelashwa ngokuvamile iwela ezigabeni ezimbili: izidakamizwa zomlomo noma imishanguzo ye-intravesical efakwe ngqo esiqandisini. Imithi yokwelashwa ingabandakanya ukugqoka kwesibindi, izidakamizwa zokucindezeleka, ama- antihistamine , ama- antispasmodics , nesinye sezifo zokubulala izinzwa.
Ngaphezu kwalokho, ukuvuselelwa kwesibindi, i-hydrodistention / hydrodilation, kanye nokuhlinzwa kuyasetshenziswa. Ukuhlinzwa, okufana nokwanda kwesisu noma i-cystectomy, kuvame ukubhekwa kuphela emva kokunye okukhethwa kukho ukwelashwa okuye kwahlolwa.
Odokotela abaningi basebenzisa isipiliyoni sabo kanye neziguli ukuze basize ukunquma ukuthi yini yokwelashwa okufanele iphakamise. Kuyaduduza ukwazi, noma kunjalo, ukuthi uma ukukhethwa kokuqala akusizi, kunezinye izindlela eziningi zokuzama.
Q: Ingabe izinguquko zokudla kanye / noma zokuphila zinganciphisa izimpawu ze-IC?
A: Yebo. Iziguli eziningi ziye zafunda ukuthi ukudla kungathonya ama-IC abo. Ukudla okunamandla kakhulu, utshwala, kanye / noma usawoti yizinto ezisungulwa kahle ze-IC.
Q: Yiziphi izinto eziyingozi zokuthuthukisa i-IC?
A. Ngokwethembeka konke, angikwazi nje. Kucacile ekucwaningweni kwe-epidemiological ukuthi ezinye iziguli ze-IC zinomlando wokutheleleka kwesisu somntwana .
Ngaphezu kwalokho, iziguli zikhuluma ngokungaqondile mayelana nezibopho zofuzo. Emndenini wami, bobabili umama, udadewethu, ugogo, umzala nomgogo baye babonisa izimpawu ezihlukahlukene zesibindi, nakuba kungenjalo IC. Kwezinye izimo, kube khona ingxoxo yeziguli ezithuthukisa i-IC ngemuva kwezinqubo zokuhlinzeka noma ukuhlala esibhedlela. Kodwa lezi azizange ziqinisekiswe ngokuqinile. Kuzodingeka silinde ukucwaninga okwengeziwe ukuqinisekisa izici zobungozi.
Q: Iziphi iziguli ze-IC zingaphendukela ukusekelwa?
A: Imisebenzi ye-IC manje yasungulwa emazweni amaningana kuhlanganise ne-Australia, i-New Zealand, i-Canada, i-USA, i-England, i-Netherlands ne-Germany. Amaqembu ethu asekela i-intanethi nge-ICN anikeza ithuba leziguli ezivela emhlabeni jikelele ukunikeza ukusekelwa komunye nomunye. EU.SA, kunezimele ezizimele, ezibambisene nezibhedlela kanye / noma i-ICA. Iziguli zinezinketho eziningana zokuhlola ngokusekelwe kulokho okutholakala esifundeni sabo.
Q: Ngisiphi iseluleko onakho mayelana neziguli ze-IC?
A: I- IC yisifo esinzima sokuba nayo ngoba ayibonakali ngaphandle. Sibhekene nenselele eyingqayizivele yokuthi kufanele senze odokotela namalungu omndeni nabangane ukuthi singakhululekile ngempela futhi sinesidingo sokunakekelwa. Ngiyakholwa ukuthi iziguli zidinga ukuba ngabahlanganyeli abanomthwalo wokunakekelwa kwezokwelapha.
Asikwazi ukulindela ukungena ehhovisi likadokotela ukuze sithole ukwelashwa. Kukhona ithuba lokuthi singaba nodokotela ongavumeli ngisho ne-IC njengesifo sangempela. Kumelwe silungele ukusebenza ngokuphumelelayo nodokotela bethu, ukuqoqa ulwazi olungasiza, futhi sibe yingxenye ekhuthele ekunakekelweni kwezokwelapha.
Indlela ephumelelayo ye-IC isondelene kahle. Nakuba sonke sifisa ukuthi singenza ukwelashwa okulodwa nje ukuze siphulukise i-IC yethu, lokhu akulona iqiniso kulokhu ngesikhathi. Esikhundleni salokho, kumele sizame ukwakha ithuluzi lamathuluzi amaqhinga asebenzayo asebenza ndawonye ukuze athuthukise izimpilo zethu kanye ne-IC yethu.
Imithi yokwelashwa ehloswe ekuphulukiseni yinto ephambili. Kodwa ngaphezu kwalokho, sidinga ukulinganisela okunempilo kwamasu okuzisiza nokudla. Akukaze kube khona isikhathi esibaluleke kakhulu sokuba nesiguli se-IC ukuze ufunde ukuphumula okuhle namasu okuphatha ukucindezeleka.
Futhi uma kuziwa ekuthandweni kwethu ngokomzwelo, ukuba ne-IC kungathinta ubuhlobo bethu nempilo yomndeni. Lesi yisikhathi esihle sokugxila kwamakhono amasha, kuhlanganise nokusetshenziswa kwamasu amancane esifana nokululekwa.
Q: Ingabe kukhona okungazange ngikubheke ngakho ukuthi uzizwa kubalulekile ukuthi abesifazane bazi?
A: Njengomholi weqembu lokusekela, into eyodwa engiyibonayo ngokuphindaphindiwe yilaba besifazane abakhathazeka ukuthi uma bephumula bese bephumula, "bayangena" esibhedlela sabo.
Ngokuvamile, bayaziphoqa ukuba baye emndenini nasemiphakathini yezenhlalakahle naphezu kwamazinga anzima kakhulu obuhlungu ngenxa yokuthi bafuna ukuba abavamile. Ngokungavumelekile, ukwenqaba ukunciphisa kungaholela ezingeni elibuhlungu lobuhlungu obunzima kakhulu ukuluphatha.
Ngikholelwa kakhulu ukuthi kufanele sibe nenhlonipho enempilo ngemingcele yethu. Uma besengcupheni yemoto futhi siphukile umlenze wethu, bekuzoba esitokisini futhi ngeke sisebenze kuso. Kodwa nge-IC, asikwazi ukusivimbela isisu futhi, ngoba iziguli zikwazi ukuhamba kalula, zikhohlwa ukuthi ziyabulala. Inhlonipho enempilo yesidingo sethu somzimba wokuphumula, kanye nokuqaphela kokuqala ubuhlungu ukuze singazibi nakakhulu, kubalulekile ekubhekaneni nokubhekana nesimo eside.
Okokugcina, abesifazane abaningi banomuzwa wokuthi uma beyeka futhi bephumula, ababe omama noma abafazi abahle. Kungaba umjikelezo ohlukumezekile wokuphelelwa yithemba nokukhungatheka lapho bekholelwa ukuthi akufanelekele ukusekelwa emndenini wabo. Bona futhi kufanele sikhumbule ukuthi sonke sigula. Njengomama noma abafazi, sasizothambekela kulabo esibathandayo. Kodwa uma thina ngokwethu sigula, ngokuvamile asifuni ukusekelwa esikudingayo. Ukugula okungapheli akusishintshi uthando esinalo ezinhliziyweni zethu emindenini yethu. Mhlawumbe lena yisikhathi sakho sokuthi umndeni wakho unakekele.