Amaqela okukhuthaza abantu abanesifo se-Crohn & Ulcerative Colitis
Ukuxilongwa kwezifo zesibindi sokuvuvukala (IBD) kuletha uluhlu lwemibuzo nemingeni. Kwaye izigulane ezininzi zifumana inkxaso ekuqondeni isifo sabo kunye nokudibana nezinye izigulane. Kulabo abahlala nesifo sikaCrohn kunye nesifo sezilonda zesilonda, kukho iinkxaso ezininzi kunye neengenzi-nzuzo ezibonelela ngeenkonzo ezahlukeneyo ekuncedeni ukuhamba ngobomi nge-IBD.
Amaqela anjalo anika yonke into evela kumntu-kumncedisi, kumnxeba uncedo lweefowuni, ukuncedisa iindleko zonyango kunye nemiba yokukhubazeka. Ukudibanisa nenhlangano yenkxaso yendawo ye-IBD kunye nokufumana ulwazi kunye noncedo olubonelelwe luyinxalenye ebalulekileyo yohambo lwesigulane kwaye inokukunceda ukunciphisa imingeni ye-IBD. Ngezantsi, fumana amaqela enkxaso yesigulane esise-United States, eCanada, naseYurophu eziye zazinikezela izibonelelo zabo ekuncedeni izigulane.
Crohn's & Colitis Foundation
I-Crohn's & Colitis Foundation (eyaziwa ngokuba yiSiseko) yona iqela elikhulu elingenasenzuzo elizinikele ekukhonzeni abantu abane-IBD e-United States. Eyasungulwa ekuqaleni ngo-1967 njenge-National Foundation ye-Ileitis ne-Colitis, iSiseko sisekelwa ngeminikelo evela kubalandeli ababini kunye noshishino. I-Crohn's & Colitis Foundation ine-intanethi eninzi, kuquka neThatha izinyathelo kunye ne-spin4 ye-Crohn's & colitis.
Abantu abane-IBD banokuxhamla nje kuphela amaqela enkxaso anikezelwa kuyo, kodwa kwakhona:
- Inkampu yehlobo ezinikezelwa abantwana abane-IBD
- Isikhungo soNcedo se-IBD, apho izigulane kunye nabakhathaleli banokuxhuma kunye ne-IBD ngongcali nge-imeyile okanye kwifowuni
- Community Crohn & Colitis, iqela lokuxhasa i-intanethi apho izigulane kunye nabaxhasi banokuxhuma ngokubanzi
- Amanyathelo ophando lwamanje axhaswa yiSiseko kunye namaqabane abo
- Amaphulo okukhuthaza ukuba aqhubeke neminqweno yezigulane kunye nabaqeqeshi bempilo kumaziko karhulumente kunye nokubonelela ngemali yophando
- I-National Council of College Leaders (NCCL), iqela elisekelwe kulutsha elisebenzayo ukwandisa imfundo nenkxaso kubantu abane-IBD ngokusebenzisa iindlela ezahlukahlukeneyo zokukhuthaza nokuxhasa imali
- Ubulungu kwiCrohn's & Colitis Foundation kubantu abane-IBD okanye nabani na onomdla ekuncedeni abo abane-IBD (ngomnikelo omncinci)
Crohn's noColitis Canada
I-Crohn's neColitis Canada yasungulwa ngo-1974 ngeliqela lezigulane ezingama-20 kunye nabanonophelo abathintekayo yi-IBD. Isiseko sinikeza iinkonzo ezahlukeneyo zenkxaso kubantu abane-IBD abahlala eCanada, eneneni yezona zizwe ezichaphazelekayo zizifo.
Ukususela ekuthobekeni okuthobekileyo kwigumbi lokufundela eligcwele abantu abachaphazelekayo ukuba akukho zibonelelo zoncedo okanye amaqhinga ophando axhasayo abo abane-IBD okanye unyango, sele likhule libe lizwe lonke kunye nezigaba ezingama-45 zendawo. Kuza kube namhlanje, iphakanyise i-$ 100 yezigidi.
I-Crohn kunye neColitis Canada isekela amanyathelo amaphando athile aquka ukuveliswa kwonyango olutsha, kodwa kunye nejolise ekuphuculeni umgangatho wobomi kulabo abane-IBD. Olunye uphando ngophando lweGEM, olufuna ukuqonda izizathu ze-IBD ngokufunda abo basengozini yokuphuhlisa uhlobo lwesifo.
Abantu abane-IBD banokubandakanya neCrohn kunye neColitis Canada ngeenkqubo zabo ezininzi ezibandakanya:
- Ukuhamba ngokukhawuleza, ukuhamba ngeengxowa-mali ekuncediseni iigulane
- I-Camp Got2Go (iindawo ezimbini eCanada)
- Inkqubo yokufundiswa kwe-IBD enika ama-10 amabhaso amabhado abo ngabanye amaxesha angama-5 000 ukuya kubafundi abane-IBD abafumana i-post-secondary education
- I-Series Gutsy Learning Series enika amavidiyo amaninzi abantu abane-IBD abangayisebenzisa ukuze bafunde kabanzi ngesifo sabo
Crohn's & Colitis UK
I-Crohn's & Colitis UK yintando esekelwe e-United Kingdom enika inkxaso neenkcukacha ngabo bahlala ne-IBD. Ukongezelela, ixhasa kwaye ixhaphaze uphando olufuna "ukuphucula ubomi babantu bonke ubudala abanesifo sikaCrohn okanye i-ulcerative colitis."
Eyasungulwa ngo-1979, i-Crohn ne-Colitis UK ineenkqubo ezifana ne-UK kunye neNtsapho yoNxibelelwano enika iziganeko ezimnandi kunye nezikhokelo kubazali bezingane abane-ABD abaneenkxalabo ezikhethekileyo, ezifana nokuhamba kwindlela yesikolo ngesifo esingapheliyo.
Ezinye izibonelelo ezinikezelwa yiCrohn's & Colitis UK ziquka:
- ISibonelelo soNcedo apho izigulane kunye nabanakekeli banokudibanisa kunye neontanga ukubonelela ngeefowuni zemfundo kunye neemali ezifunekayo iintsuku zemihla
- Izibonelelo zokukhubazeka apho abantu abane-IBD e-UK bangafaneleka kwaye bangakwazi ukuhamba ngokugqithiseleyo ngoncedo lukaCrohn's & Colitis UK
- Iprogram yeMfundo Yonyango enika iziganeko zomntu kwizigulana ukuze ufunde kabanzi ngesifo sabo
- Hamba! iziganeko e-UK ezinika ithuba lokuba izigulane zixhaswe kwi-Crohn's & Colitis UK kunye nokuhlangabezana nezinye izigulane kunye nabanonophelo
Crohn's & Colitis Australia
I-Crohn ne-Colitis Australia (CCA) yinhlangano engenzi nzuzo eyenzelwe "ukwenza ubomi bube bukhulu" kubantu abahlala ne-IBD e-Australia. I-CCA yasungulwa ngaphezu kweminyaka engama-30 eyadlulayo kwaye yaziwa ngaphambili ngokuba yi-Australian Crohn's and Colitis Association.
I-CCA ithatha inxaxheba kwiiphando zophando kwaye inika i-postgraduate research scholarships, kodwa injongo yabo ephambili kukuxhasa izigulane ze-IBD. Imithombo yoxhasano kwinkqubo yazo iquka iminikelo kunye nokuxhaswa kwemali yoluntu.
Abantu abachaphazelekayo yi-IBD bangaba ngamalungu kwaye bamkele i- Insight , i-CCA umagazini, ikhadi "elingenako ukulinda" kunye nokufikelela kwicandelo elilodwa lamalungu kwiwebhsayithi. Ezinye zeeprogram kunye neenkonzo ezinikezelwa yiCrohn's & Colitis Australia ziquka:
- Amaqela enkxaso-mntu kumntu wonke e-Australia avulekileyo kubantu abanobuchopho babo buchaphazelekayo yi-IBD
- Amaqela aPop-Up ukulungiselela imali ukuxhasa inkxaso ye-IBD
- I-IBD yoNcediso (1-800-138-029) enika inkxaso nenkxaso yemoya
- Ukutshintsha Ubomi Bomngeni apho abathathi-nxaxheba bangakwazi ukugijima, ukubhukuda okanye ukuhamba ngebhayisikili ukuphakamisa iimali ezixhasa iinkqubo ze-CCA
Ukuqhagamshelana ukuphilisa i-Crohn ne-Colitis
Ukuxhuma kwiCrohn's and Colitis (C ukuya kwiC) yintlangano engenzi-nzuzo eyenzelwe ukuxhasa izigulane nge-IBD. Eyilwe nguStacy Dylan, unina womntwana ohlala nesifo sikaCrohn, kunye noDana Zatulove, unina womntwana ophila ne-ulcerative colitis, iqela lizinikele ekuphandeni uphando olujolise ekuqondeni imbangela ye-IBD kunye nokukhusela abo Umngcipheko ophezulu wokuphuhlisa IBD.
C ukuya ku-C iphakamisa imali ngeminikelo, i-gala yonyaka, iLwala lobusuku ukuze iCrohn's and Colitis, i-Chip kwiintambo zegalufu ze-Crohn, kunye neengoma ze-piano zokufunda. Badibanisa neCedars-iSinone Medical Center eLos Angeles ukubonelela ngamacandelo enkxaso ngabanye kubantu abachaphazelekayo yi-IBD, kubandakanywa izigulane, abanonophelo, abantwana kunye neentsapho.
Amantombazana anamaGuts
Amantombazana anamaGuts (i-GWG) yinhlangano engenzi nzuzo eyenziwe nguJackie Zimmerman emva kokuphendula okulungileyo kwiveki engafanelekanga yokuxhuma kumntu kunye nabanye abafazi abane-IBD ibonise imfuno yokunxibelelana kwabaseTyhini. Amantombazana anama-Retreats ama-Guts Retreats yi-week-end yokuhlangana kunye nabasetyhini kunye ne-IBD ukudala ubudlelwane obomeleleyo kwaye bafunde indlela yokuphila kangcono ngesifo sabo.
I-GWG iphakamisa imali ngeminikelo ngqo kunye neziganeko, ezifana ne-5k yehlabathi. Banika kwakhona i-IBD uluntu ngeqela labucala le-Facebook yabasetyhini abachaphazelekayo yi-IBD, iividiyo ezichanekileyo kunye neprogram ye-pen-pal.
Phucula iCareNow
I-ImproveCareNow yiqela elingenzi nzuzo eliye ladala inethiwekhi yezigulane, iintsapho, abanonophelo, kunye nabaqeqeshi bezempilo ukuphucula ukunakekelwa kwabantwana abaphila nesifo sikaCrohn kunye nesifo sezilonda zesilonda. Zixhasa inkxaso yophando eyenzelwe kwaye iqhutywe ukubandakanya izigulane kunye neentsapho ezichaphazelekayo yi-IBD.
Izinzuzo ezinikezelwa kwi-IBD yoluntu nge-ImproveCareNow ziquka izixhobo zokuhlala kunye ne-IBD, ezifana neencwadi zokuzilawula, ukuzicwangcisa ugqirha, kunye ne-ImproveCareNow Exchange, indawo ekhuselekileyo apho abathathi-nxaxheba bangabelana ngolwazi. Iikhompyutheni zoLuntu eziPhuculo lweNtuthuko nazo ziqhutywa rhoqo ngonyaka entwasahlobo kunye nokuwa. Umbutho uphakamisa iimali ngokunikela ngokuthe ngqo kunye nokusebenzisana namashishini kunye noluntu.
ILizwi
Ukujongana nokuxilongwa kwe-IBD yinto enzima kakhulu yokokuba izigulane akufanele zihambe zodwa. Oogqirha kunye nabanye abanakekeli bangaba luncedo, kodwa abantu abaphila nesifo sikaCrohn kunye ne-ulcerative colitis baya kufuna inkxaso eninzi kwindlela yabo yokugula.
Yingakho amaqela enkxaso-mali egxininiswe ngamagulane ayenze ngokukodwa kwiindawo apho i-IBD ixhaphake kakhulu, njenge-United States, Canada kunye neYurophu. Abantu abane-IBD kufuneka baxhamle ngeminikelo yokunikezela ngamaqela eenkxaso ze-IBD ukuze baphile ubomi obuhle kakhulu.