Izinsiza Ezitholakalayo Izingane Nezinhlalalo Eziphila Ngezimo Zokugaya
Izingane ezinezinkinga zokugaya izifo-ezifana nesifo sofuba (IBD, kuhlanganise nesifo sikaCrohn nesifo sochungechunge), i-short bowel syndrome, i- gastroparesis nezinye izifo ezibangelwa yi-motility, isifo se-Hirschprung nesifo se-celiac-zibhekene nokukhathazeka okukhethekile njengoba zihamba ngokuphila okugula okungapheli. Ngokufanayo, abazali nabanakekeli badinga ukusekelwa kanye nokwaziswa okungafani nalokho okudingekayo kubantu abadala abatholakale benemibandela.
Kunezinzuzo eziningana nezinzuzo ezizimele e-United States nase-United Kingdom ezinikezelwe emindenini esekelayo ehlala nezifo zokugaya nezimo. Lawa maqembu ahlinzeka izinhlelo, usizo, kanye nolwazi ikakhulukazi kubantwana nabazali babo kanye nabanakekeli.
I-Rally yentsha
I-Youth Rally iyiqembu elizinikele ekuhlinzekeni okuhlangenwe nakho kwenkathi yokuhlala ehlobo ehlala isikhathi eside, ehlala ngesonto, kubantwana abaphila nezifo zesibindi kanye nesibindi. Ezinye zezimo zezokwelapha ezitholwa ngabakwa-campers zihlanganisa ukukhumba isikhwama seKoch, ileostomy, urostomy, colostomy, noma iBarnett Continent Intestinal Reservoir (BCIR).
Ngonyaka we-Youth Rally, izingane zinethuba lokuhlangana nokuzibandakanya nezinye izingane eziphila nezinselele zempilo ezifanayo endaweni ephephile nokusekelayo. Ngaphandle kwemisebenzi yokuzilibazisa, imihlangano yemfundo esiza izingane ukuba zifunde ukubhekana nokuphathwa nokugula kwazo zinikezwa.
Abakwa-Campers bakhuthazwa ukuba baxhaswe ukuze baxhase ukubhaliswa kwabo ekamu kanye ne-Youth Rally, futhi ithole ukwesekwa kwabalingani bomkhakha. Amavolontiya, kufaka phakathi abaqeqeshi bezokwelapha nabadala, basize ekuhlinzekeni ukunakekelwa kwesayithi nokuqinisekisa ukuthi ikamu lihamba kahle. I-LEAK yi-newsletter ye-imeyili eyenziwe ngabasebenzi be-Youth Rally ukugcina abakwa-campers bahlanganyele unyaka wonke.
Ukondla isisekelo sokuqwashiswa kweThubhu
I-Feeding Tube Awareness Foundation iyisiqhema esingenzi inzuzo esikhonza umphakathi wabazali nabanakekeli abazinakekela izingane ezitholayo ukudla nge tube. Ezinye zezifo nezimo ezingase zidinga ithuluzi lokudla zihlanganisa i-IBD, isifo se-reflux se-gastroesophageal (GERD), i-imperforate anus, isifo se-Hirschsprung , nezifo ezitholakalayo zokugula.
Abazali nezingane ezisendleleni yokuphila ngenkathi zihlanganisa ukuxilongwa kwe-tubus zibhekene nokucwaswa nokungaqondi kahle, yingakho isisekelo sigxile ezintweni ezinhle zokudla kwe-tube.
Inhlangano iphinde igcine ulwazi olubalulekile lwelwazi mayelana nokudla kwe-tube, kufaka phakathi izinhlobo zethubhu, ukuhlinzwa kanye nezinqubo, izivivinyo, izimo ezingadinga amashubhu okudla, nokudla nokudla. Ngaphezu kwalokho, kukhona amathiphu namaqhinga avela kubazali abanolwazi mayelana nendlela yokuhlanganisa ukuphakela kwe-tube kuya emndenini nasezikoleni nasezinkingeni zokuxazulula izinkinga.
I-Short Bowel Syndrome Foundation yezingane ze-New England, Inc. (SBSNE)
I-Short Bowel Syndrome Foundation yezingane ze-New England, Inc. (SBSNE) yiqembu elingenzi inzuzo esekelwe e-Rhode Island enikezela ukusekela kanye nolwazi lwezingane nabantwana abanesifo samathumbu esifushane (SBS) ngenxa yesifo noma isimo .
Abazali bezingane abahlala ne-SBS bangacela iphakheji lokunakekelwa kwezinto ezinikelwe zona, okufaka izinto ezifana ne-onesies, izingubo zokugcoba, izindlu zangasese kanye nezilwane ezifakiwe. I-SBSNE iphinde igcine uhlelo lokushintshaniswa kokunikezwa lapho ukunikezwa okunikezwayo kungadluliselwa komunye umndeni ohlala ne-SBS ongawasebenzisa.
I-Crohn sika-Childhood Research Association (i-CICRA)
I-Crohn e-Childhood Research Association (i-CICRA) iyisibonelelo esisekelwe e-United Kingdom izingane ezisekela abantu abadala kanye nemindeni yabo abahlala nesifo sikaCrohn kanye nesifo sofuba esiswini. Isisekelo esasungulwa njenge-Crohn sika-Childhood Research Association ngo-1978, leli qembu linikeza ukusekela iziguli nemindeni yabo, futhi linikeza ukuqeqeshwa kobudlelwano bokucwaninga ukugqugquzela odokotela ukuba bangene kwi- gastroenterology yezingane .
ICICRA ithola uxhasomali oluvela eminikelo yangasese, imicimbi yezimali, kanye nabaxhasi bemiboni. Ubulungu bukhululekile futhi i-CICRA ingahlinzeka ngamapheshana ekwaziswa ngeziguli nokusetshenziswa ezikoleni. Ezinye zezinsiza ezitholakalayo eziguli zifaka:
- Umzila wocingo (0208 949 6209) kanye ne-imeyili (support@cicra.org) lapho abahlinzeki bangathola ukwesekwa nolwazi
- I- CICRA Insider , i-newsletter yamaphephandaba equkethe ulwazi mayelana nokucwaninga ngesifo sikaCrohn kanye ne-ulcerative colitis kanye nezinto ezenzeka ngothando
- Ibhulogi yokucwaninga egxile emininingwaneni yakamuva ebhaliwe yizingane ezinganeni ze-gastroenterologist ezibeka izifundo zamuva zesayensi zibe umbono
- I-Cool Zone, indawo yezingane ezibandakanya isithangami kanye nohlu lwabazali