Zvinyorwa Zviripo Kuvana Nemhuri Kurarama Nezvokudya Zvokudya
Vana vane zvirwere zvinokonzera kudya-zvakadai sechirwere chechirwere chirwere (IBD, kusanganisira Crohn's disease uye ulcerative colitis), nguva shoma syndrome, gastroparesis nedzimwe zvirwere zvemhepo, chirwere chaHirschprung, uye chirwere cheliacac-chinosangana nezvinetso zvakanyanya sezvavanotarisa upenyu nehosha isingaperi. Saizvozvowo, vabereki nevanochengeta vanoda rubatsiro uye ruzivo rwakasiyana nezvakakosha kune vanhu vakuru vanoonekwa kuti vane mamiriro aya.
Kune zvizhinji zvisingabatsiri uye zvipo muUnited States uye neUnited Kingdom zvakatsaurirwa kutsigira mhuri dzinorarama nezvirwere zvekudya uye mamiriro ezvinhu. Aya mapoka anopa mapurogiramu, rubatsiro, uye ruzivo rwevana chaivo nevabereki vavo nevanochengeta.
Vechiduku Rally
Vechiduku Rally ibato rakatsaurirwa kupa ruzivo rwekugara, rwevhiki-refu, kugara muzhizha ruzivo rwevana kune avo vari kurarama nemaronda uye chirwere chechirwere. Zvimwe zvehutano zvinosangana nevatambi vemasasa zvinosanganisira kuva neKoch pouch, ileostomy, urostomy, colostomy, kana Barnett Continent Intestinal Reservoir (BCIR).
Pagore reRally Rally, vana vane mukana wekusangana uye kufambidzana nevamwe vana vanogara nematambudziko ehutano akafanana munzvimbo yakachengeteka uye inotsigira. Mukuwedzera kumabasa ekuvaraidza, semisangano yezvidzidzo iyo inobatsira vana kudzidza kubata nekugadzirisa zvirwere zvavo zvinopiwa.
Makamera anokurudzirwa kuti adzidzise kuitira kuti vatsigire mazita avo ekunyorwa kwekambani uye Youth Rally, iyo inogamuchirawo rubatsiro kubva kune vashandi vehurumende. Vazvipiri, kusanganisira vashandi vezvokurapa uye vakupa mazano makuru, vanobatsira pakupa nzvimbo yekuchengetedza nzvimbo uye pakuvimbisa kuti musasa unoshanda zvakanaka. Bhuku re LEAK ndiro tsamba ye email yakagadzirwa nevashandi vechidiki veRural Rally kuti varambe vari mumasasa vanobatanidzwa gore rese.
Feeding Tube Kuziva Nheyo
The Feeding Tube Awareness Foundation ndiyo boka risingabatsiri rinoshumira munharaunda yevabereki nevatarisiri vari kutarisira vana vanogamuchira chikafu kuburikidza ne tube. Zvimwe zvezvirwere uye mamiriro ezvinhu angada kuti chigadzirwa chekudya chibatanidze IBD, chirwere chegastroesophageal reflux (GERD), imperusate anus, chirwere chaHirschsprung , uye zvirwere zvepenital zvegumbo rekudya.
Vabereki nevana vari kufamba nehupenyu panguva iyo vachibatanidza kufudza kwehutachiona kusarurwa kusarurwa uye kusanzwisisana, ndicho chikonzero nheyo inotarisa pane zvakakosha zvekurapa.
Sangano rinochengetedza nhoroondo yakakura ye ruzivo pamusoro pekugadzira tube, kusanganisira tube types, chirwere uye nzira, maedzo, mamiriro ezvinhu angada kudyisa mabhesi, uye kudya uye kudya. Mukuwedzera, pane mazano uye matanho kubva kuvabereki vane ruzivo nezvekubatanidza hutachiwana kudya mukati memhuri uye kuchikoro upenyu uye zvinetso zvinetso.
Short Bowel Syndrome Foundation yevana veNew England, Inc. (SBSNE)
The Short Bowel Syndrome Foundation yevana veNew England, Inc. (SBSNE) iri boka risingabatsiri rakabva kunze kweRhodde Island rinopa rubatsiro uye ruzivo rwevana nevabereki vane chirwere chepfupi chechirwere (SBS) sechikonzero chechirwere kana chirwere .
Vabereki vevana vanogara neSBS vanogona kukumbira kuchengetwa kwezvinhu zvakapiwa kuti zvitumire kwavari, izvo zvinosanganisira zvinhu zvakadai seeesesi, mabhezi, zvigadziri, uye mhuka yakakanyiwa. SBSNE inotarisirawo purogiramu yekugoverana kwekugovera apo zvipo zvinopiwa zvinogona kudzorerwa kune imwe mhuri inogara neSBS inogona kuishandisa.
Crohn's in Childhood Research Association (CICRA)
Crohn's in Childhood Research Association (CICRA) ishamwari inowanikwa muUnited Kingdom inotsigira vana uye vechidiki uye mhuri dzavo dziri kurarama neCrohn's disease uye ulcerative colitis. Pakutanga yakatangwa seCrohn's in Childhood Research Association muna 1978, boka racho rinopa rubatsiro kune varwere nemhuri dzavo, uye rinopa ruzivo rwekudzidzira ushamwari pamwe nekukurudzira vanachiremba kupinda muchirwere chevana chirwere chegastroenterology .
CICRA inogamuchira mari kubva kumipiro yega, kuunganidza zviitiko, uye vashandi vemabhizimusi. Unhengo huripo uye CICRA inogonawo kupa mapepa ehuwandu hwevarwere uye yekushandisa muzvikoro. Zvimwe zvezvinhu zvinowanikwa kuvarwere zvinosanganisira:
- Nhare yerunhare (0208 949 6209) uye email (support@cicra.org) apo vanochengetedza vanogona kugamuchira kutsigirwa uye ruzivo
- ICICRA Insider , nhau ye periodic ine ruzivo pamusoro pekutsvakurudza kune Crohn's disease uye ulcerative colitis pamwe chete nezvakaitika pamwe nerudo
- Tsvakurudzo yebhuku rinotarisa pamusoro pehuwandu hwemashoko anonyorwa nevana vegastroenterologist shamwari dzinowedzera zvidzidzo zvesayenzi munguva pfupi
- The Cool Zone, nzvimbo yevana inosanganisira musangano nekunyoresa penpal