I-Q + A kunye noJill Osborne, uMsunguli kunye ne-CEO ye-Interstitial Cystitis Network
Oku kulandelayo kuvela ku dliwano-ndlebe noJill Osborne, uMsunguli kunye ne-CEO ye-Interstitial Cystitis Network:
Q: Nceda undixelele ngemvelaphi yakho kunye nomdla kwi-Interstitial Cystitis (IC).
A: Ndiyinto eqhelekileyo yezigulane ze-IC. Ndandineminyaka engama-32 xa iimpawu zam ziqala. Izihlandlo eziliqela ngenyanga, ndafumana ubuhlungu obukhulu, ukungahambi kakuhle, kunye nesidingo sokukhupha rhoqo , ngakumbi ebusuku.
Nangona ngokuqinisekileyo kwakuthatyathwa njengesifo, iintsholongwane azizange zifumaneke emlanjeni.
Kwathatha umnyaka ukuxilonga i-IC yam. Ngehlobo le-1993, ndandingakwazi ukuhamba ngebhokisi ngaphandle kokukhala. Ukuqhuba kwakunzima kakhulu, umsebenzi wawungenakwenzeka, kwaye mna (njengoko ezinye izigulane ze-IC zenza) zibuhlungu buhlungu. Nangona ndandinomdla we- urologist obalaseleyo, ndiziva ndedwa kwaye ndedwa. Emva koko, ngolunye usuku, ndathetha nesinye isigulane se-IC ngefowuni. Ngexesha lokuqala, ndaziva ukuba umntu uyayiqonda ngokwenene imeko yam. Ndafunda amanyathelo amaninzi okunceda kunye neyeza eziqhelekileyo ezandinika uncedo olukhulu. Uninzi lwazo zonke, ndanikwa isipho sethemba.
Ndaqalisa iqela lokuqala lokuxhasa IC iinyanga ezintathu nje emva kokuba ndixilonge kwaye ndongamela inkomfa yokuqala ye-IC yonyango emva konyaka. Ngo-1994, saqaphela imfuneko yokuzisa inkxaso ngqo kumakhaya nakwiiofisi zabangenako ukuya kwiintlanganiso zendawo, ngoko ke ukusekwa kwethu kwesifo sokuqala sesifo kunye namaqela enkxaso ye-IC kwi-AOL.
Ngowe-1995, saqala kwiwebhu kwiwebhu ngokudala i-website yeCystitis Network ngenjongo yokunika inkxaso kunye nolwazi kwizigulana, ilayibrari yophando olunzulu, kunye nezixhobo zonyango kwizonyango (konke kungabi nantoni kubathathi-nxaxheba bethu). Ngomhla ka-1998, i-ICN yasungulwa njengeyona nkampani yokuqala yokushicilela isigulane e-IC.
Ngoku sisebenzela izigulane ezili-10 000 kumazwe angama-16.
Umbuzo: Yintoni eyenza IC?
A: Naphezu kweeminyaka zemiqulu ye-bladder syndrome (ngoku ibizwa ngokuba yi-IC), kunye nokufumanisa ukuba kwachaphazela amadoda nabantwana, i-IC yayibhalwe ngokudabukisayo isifo sesifo sabasetyhini ngawo-1950 xa abaphandi bacetyisa ukuba ibhinqa elaliye phantsi koononophelo lwezocwangco nge-IC ekhuselekileyo mhlawumbi "yayicinezelekile inzondo kubazali abaphathwa ngokunyameka ngeempawu zesisu kusukela ebusana." Ngamhla, ezinye izigulana zidibana noogqirha abakholelwa ukuba akukho nonyango ye-IC ngaphandle kokudluliselwa kwindlela yokuhlola kwengqondo.
Kwaye kwaze kwaba ngo-1987 ukuba ii-National National Institutes of Health zidibanise intlanganiso yazo yokuqala ye-IC, ukusekwa kwengcaciso yesi sifo nokuqalisa ikhosi kwikhando yophando. Abaphandi ngoku bakholelwa ukuba i-IC inokuvela kwimvelaphi emininzi, kubandakanyeka inokuba yinto enqwenelekayo (inokubambelela kwizicubu kunye nokungathotyelwa kwintsholongwane evumelekileyo), ukuchithwa kwecandelo le-GAG eludongeni lwebladder, ukubandakanyeka kweseli yesithambiso kunye nokuvuvukala kwe-neurogenic. Akukho mvumelwano ngalesi sizathu ngenxa ye-IC kwaye abaninzi bakholelwa ukuba isifo, mhlawumbi ngeemeko ezahlukeneyo.
Umbuzo: Ziziphi iimpawu zeCstitis?
A: Izigulane ze-IC zinokuhlangabezana nanoma yiyiphi inhlanganisela yokuvama kwamavolonti (ngaphezulu kwamaxesha asibhozo ngosuku), ukuphuthuma komzimba, kunye / okanye intlungu yebladder. Ngeenjongo zokuxilonga, ugqirha unokukwazi ukwenza i-hydrodistress ukukhangela iincinci ezincinane ezifunyenwe kwizigulane ze-IC, ezibizwa ngokuba yi-glomerulations.
Izigulane ze-IC zinokufumana isidingo sokuvuthwa rhoqo ebusuku (i- nocturia ), ukungathandeki ngesondo, kunye nobunzima bokuhlala okanye ukuqhuba imoto. Izigulane ze-IC nazo zinokuthi zinciphise amandla kunye / okanye uvakalelo ekudleni (ezifana nejarberry, i-acids, utywala, i-chocolate, i-citrus, kunye nokunye).
Uyakwazi ukuqaphela isigulane se-IC ngokufuneka rhoqo ukusebenzisa indlu yokugcina, ngokukodwa xa uqhuba imida emide.
Umbuzo: I-IC ihluke njani kwezinye iingxaki zesisu?
A: Ahhh ... lo ngumbuzo we-$ 10,000. Kufuneka ukhumbule ukuba i-bladder inokuthetha kuphela ulwimi olulodwa, olo lwentlungu, imvama, okanye ukuphuthuma. Ngoko naphezu kweemeko okanye ukuxhwaleka, izigulane zesibhanki zifumana iimpawu ezifanayo.
Izigulane ze-Prostatitis, umzekelo, ngokuqhelekileyo ziziva iintlungu , ubude, ukunciphisa umchamo wegazi, kwaye mhlawumbi kungabikho amandla kunye nentlungu phambi, ngexesha okanye emva kokunyuka .
Izigulane ze-Urethritis zinokubakho amaxesha amaninzi, ukuphuthuma, okanye intlungu nangona kubonakala ngathi ukuvuvukala nje kwe-urethra. I-urethritis inokubangela ukusuleleka okanye ukuthinteka kwiisepha, i-spermicides, iimveliso zokuhlambela okanye i-douches. Izigulane zihlala zikhalaza ngokubandezeleka ngokuthe ngqo, ngamanye amaxesha ngexesha lokucoca.
I-urethral syndrome yenye yegama elixhasayo. Oogqirha abavumelani nentsingiselo yesifo somzimba. Ngokwenene, kubonakala ukuba isetyenziswe kwizigulane ezinokubakho ukukhawuleza okanye ukuphuthuma, kodwa kungekho ntsho longwane efunyenweyo.
I-Trigonitis esinye isifo esinesifo esifanelekileyo kwi-IC (ubukhulu, ukukhawuleza, / okanye intlungu). I-Trigonitis isetyenziswe xa oogqirha beqaphela ukuba i-trigone kwisibhanki inobonakala obufana ne-cobblestone. Abanye oogqirha baphikisana ne-trigonitis njengesifo kuba bakholelwa ukuba i-trigone ngokwemvelo ibheka ngale ndlela.
Izigulane ze-vesiphonic syndrome ezingasasebenzi zingabinamava , ukuphuthuma, kunye neepisodes zokungahlambuluki.
Esi sifo sikholwa ukuba yintlupheko ye-neurological ye-bladder. Kubizwa ngokuba yi-detrusor hyperreflexia xa i-neurological cause isaziwa, kwaye i-detrusor engazinzekanga xa kungekho nto ye-neurologic engavamile.
I-cystitis ye-interstiti, i- bladder syndrome , kunye ne-frequency-urgence-dysuria syndrome zisetyenziselwa ukuchazwa ngokuphindaphindiweyo, ukuphuthuma, kunye / okanye iimvakalelo okanye uxinzelelo olujikeleze isilonda, i-pelvis, kunye ne-perineum.
Kwimijikelezo yesigulane kunye nodokotela, sisoloko sikhathazeke ngakumbi malunga nokuphathwa kweempawu kunokugqithisa okanye ukuxubusha "igama" lesi sifo. Ukuba isigulane asikhathazeki, badinga uncedo ngaphandle kwegama layo.
Umbuzo: I-IC ifumaneka njani?
I-A: Izigulane ze-IC zifumanisa ukuba zihlalutyo lweendlela zabo zokuhamba, iimpawu zabo, kunye nokupheliswa kwezinye izifo.
Kwimeko efanelekileyo kakhulu, izigulane ezityholwa ukuba yi-IC zizalise idayari ye-void ngexesha elithile eliya kubangela ukuba isigulane kunye nodokotela bakwazi ukubona iipateni zokuvota, imiqulu ye-urine, kunye namanqanaba entlungu. Ukuba ukuxilongwa kukhankanywa, ugqirha unokukhetha ukwenza ezinye iimvavanyo zokuxilonga ukulawula ezinye izifo. Ukuba ezi mvavanyo ziphuma zibi kwaye ugqirha uyakrokrela ubukho be-IC, banokukhethwa ukwenza i-hydrodistention. Ngokukhupha i-bladder ngamanzi, banokubukela iindonga zebladder ngenxa ye-petechial hemorrhages (glomerulations) ezifumaneka kwizigulane ezininzi ze-IC. Olunye uvavanyo olutsha lweenkqubo zokuvavanya uphando uphando.
Umbuzo: Ziziphi ionyango ze-IC?
A: Kwiminyaka ukususela kwiintlanganiso zokuqala ezisemthethweni kwi-IC ngo-1987, izazinzulu ziye zahlola ezininzi ezinokuthi, kwaye kwezinye iziganeko, zonyango.
Ngelishwa, akukho unyango olusayi kusekwa njenge "unyango" lwe-IC. Ngoko ke, kubalulekile ukuqonda ukuba ezininzi unyango zenzelwe ukunciphisa iimpawu kunokunyanga izifo.
Iingonyango ze-IC zihlala phantsi kwiindidi ezibini: iziyobisi zomlomo okanye imithi ye-intravesical ebeka ngqo kwi-bladder. Iingcango zomlomo zingabandakanya izambatho ze-bladder, i-anti-pressressants, i- antihistamines , i- antispasmodics kunye ne-anesthetics ye-bladder.
Ukongezelela, ukuvuselela iimbilini, ukunyuswa kwamanzi, ukusetyenziswa kwamanzi kunye nokuhlinzwa. Ugqirha, njenge-augmentation bladder okanye i-cystectomy, idlalwa kuphela emva kokuba zonke iinketho zonyango zihlolwe.
Uninzi oogqirha basebenzisa amava abo kunye nezigulana ukunceda ukuba bathathe isigqibo malunga naluphi unyango lokucebisa. Kuthuthuzela ukwazi, nangona kunjalo, ukuba ukuba ukhetho lokuqala aluncedi, kukho ezinye iindlela ezininzi zokuzama.
Q: Ingaba ukutya kunye / okanye ukuguquka kwendlela yokuphila kunokunciphisa iimpawu ze-IC?
A: Ewe. Izigulane ezininzi ziye zafunda ukuba ukutya kunokuchaphazela ii-IC. Ukutya okunomdla kakhulu, utywala, kunye / okanye usawoti ziyiziphumo ezicacileyo zeC.
Umbuzo: Ziziphi izinto ezinobungozi bokuphuhlisa i-IC?
A. Konke ukunyaniseka, andazi nje. Kucacile ekubeni uphando lwe-epidemiological ukuba ezinye izigulane zase-IC zinembali yokukhulelwa kwabantwana .
Ukongezelela, izigulane zixoxa ngokuthe ngqo malunga nezibophelelo zemizimba. Kwintsapho yam, bobabini unina, udade, unina, umzala, kunye nogogo baye bafumana iimpawu ezininzi ezinobuncwane, nangona kungabikho IC. Kwezinye iimeko, kukho ingxoxo yezigulane eziphuhlisayo ii-IC emva kokucwangcisa okanye ukuhlala esibhedlele. Kanti oku akuqinisekanga ngokuqinisekileyo. Kuza kufuneka silinde uphando olongezelelweyo ukuqinisekisa ubungqina bengozi.
Umbuzo: Ziphi na izigulane ze-IC eziya kunika inkxaso?
A: Imisebenzi ye-IC sele iqulunqwe kumazwe amaninzi kuquka ne-Australia, iNew Zealand, Canada, i-USA, i-England, iNetherlands kunye neJamani. Amaqela ethu enkxaso ye-intanethi nge-ICN anika ithuba lokugulisa izigulane ezivela kwihlabathi jikelele ukunika inkxaso ngenkxaso. E-USA, zikhona ezizimeleyo, izibhedlele ezibandakanyekayo kunye / okanye amaqela asekela ICA. Izigulane zinokukhetha okungakumbi ukuhlola ngokusekelwe kwinto efunyenweyo kwingingqi yabo.
Umbuzo: Yiziphi iingcebiso ozifumanayo kwizigulane ze-IC?
A: I- IC isifo esinzima ukuba sinaso kuba singabonakali ngaphandle. Sibhekene nomngeni oyingqamleko wokuba uqiniseke oogqirha kunye namalungu entsapho kunye nabahlobo ukuba asikhathazi ngokwenene kwaye sinesidingo sokunyamekela. Ndiyakholelwa ukuba izigulane kufuneka zibe neqela elijongene nokunyamekela unyango lwabo.
Asinakulindela ukuhamba kwiofisi yegqirha ukufumana unyango. Kukho ithuba esinokuba nalo ugqirha ongenakwamkeli i-IC njengesifo sangempela. Kufuneka silungiselele ukusebenza ngokuphumelelayo noogqirha bethu, ukuqokelela ulwazi olunokuba luncedo, kunye nokuthatha inxaxheba ekunyamekeleni kwonyango.
Indlela ephumelelayo ye-IC ifakwe kakuhle. Nangona sonke sinqwenela ukuba senze enye yonyango yokwelapha i-IC yethu, oku akukwenyaniyo kweli nqanaba ngexesha. Endaweni yoko, kufuneka sizame ukwakha itekethi yezixhobo ezicwangcisekileyo ezisebenzisanayo ukuphucula ubomi bethu kunye ne-IC yethu.
Izonyango zonyango ezijolise ekuphulukiseni ziphambili. Kanti ukongezelela, sifuna kwakhona ukulinganisela okunempilo kwezicwangciso zokunceda kunye nokutya. Akuzange kubekho ixesha elibaluleke ngakumbi kwisigulane se-IC ukufunda ukuphucula okuhle nokucwangciswa kocwangciso.
Kwaye xa kufikelele ekuthandweni kwethu kwemvakalelo, ukuba neC IC inokuchaphazela ubudlelwane bethu kunye nosapho. Eli lixesha elifanelekileyo lokugxila kwizakhono ezintsha, kubandakanywa nokusetyenziswa kwezicwangciso zexesha elifutshane njengengcebiso.
Umbuzo: Ngaba kukho nto engayifumananga nayo ukuba ubalulekile ukuba abafazi bazi?
A: Njengeenkokeli zeqela lokuxhasa, into enye ndiyibonayo ngokuphindaphindiweyo ngabafazi baxhalabile ukuba xa behla bephumula, ukuba "bazinikela" kwisifo sabo.
Ngokuqhelekileyo, bayazinyanzela ukuba baye kwiintsapho kunye nakwiintlalo zentlalo nangona kunzima kakhulu iintlungu ngenxa yokuba bafuna ukuqhelekileyo. Ngokungavumelekanga, ukungavumi ukuphuculwa kungakhokelela kwiimeko ezinzima zokubandezeleka ezinzima kakhulu ukunyanga.
Ndiyakholwa kakhulu ukuba kufuneka sibe nenhlonipho enemimiselo yethu. Ukuba sasisengozini yemoto kwaye siphule umlenze wethu, kuya kuba sephosa kwaye asiyi kubaleka kuyo. Nangona kunjalo ne-IC, asikwazi ukusikhupha isilwanyana kwaye, ngenxa yokuba izigulana zihamba ngokulula, zikhohlwa ukuba, ngokwenene, zimele. Inhlonipho enempilo yesidingo somzimba wethu wokuphumla, kunye nokuqaphela kwangaphambili intlungu ukuze singazibi nakakhulu, kubalulekile ukuxhatshazwa kwexesha elide.
Ekugqibeleni, abaninzi abasetyhini banomuvo wokuthi ukuba bayeke ukuphumla, abahlali boomama okanye abafazi abalungileyo. Ingaba ngumjikelo onobukrakra wokuphelelwa yithemba kunye nokukhungatheka apho bakholelwa ukuba abafanelanga ukuxhaswa kwintsapho yabo. Bona kwaye kufuneka sikhumbule ukuba sonke sigula. Njengomama okanye abafazi, siza kubakholisa abo sithandayo. Sekunjalo xa thina sigula, sisoloko sifuna inkxaso esiyidingayo. Isifo esingapheliyo asitshintshi uthando esinalo ezintliziyweni zethu. Mhlawumbi le lixesha lakho lokunyamekela intsapho yakho.