Zowonjezera Zowonjezera Ana ndi Mabanja Okhala ndi Zinthu Zogonana
Ana omwe ali ndi matenda opatsirana m'mimba-monga matenda opweteka kwambiri (IBD, kuphatikizapo Crohn's disease ndi ulcerative colitis), matenda ochepa a m'mimba, gastroparesis ndi matenda ena a motility, matenda a Hirschprung, ndi matenda enaake-amakumana ndi mavuto apadera pamene akuyenda moyo wodwala matenda aakulu. Mofananamo, makolo ndi osamalira amafunikira chithandizo ndi chidziwitso chomwe sichiri chofanana ndi chomwe chimafunikira kwa akulu omwe amapezeka ndi zifukwa izi.
Pali zambiri zopanda phindu ndi zopereka zachifundo ku United States ndi ku United Kingdom zomwe zimapereka kuthandiza mabanja omwe amakhala ndi matenda opatsirana ndi matenda. Magulu awa amapereka mapulogalamu, chithandizo, ndi chidziwitso makamaka kwa ana ndi makolo awo ndi osamalira.
Youth Rally
Achinyamata Rally ndi gulu lodzipereka kuti likhale lopindulitsa, la sabata, zomwe zimakhala zogona kumsasa kwa ana omwe akukhala ndi matenda a m'mimba ndi chikhodzodzo. Zina zamankhwala zomwe omanga msasa amakhala nazo zikuphatikizapo kukhala ndi thumba la Koch, ileostomy, urostomy, colostomy, kapena Barnett Continent Intestinal Reservoir (BCIR).
Panthawi ya Youth Rally, ana ali ndi mwayi wokumana ndi kucheza ndi ana ena omwe ali ndi mavuto omwe ali ndi thanzi labwino ku malo otetezeka ndi othandizira. Kuwonjezera pa zosangalatsa, masemina a maphunziro omwe amathandiza ana kuphunzira kupirira ndi kuthetsa matenda awo amaperekedwa.
Anthu ogwira ntchito pamapikisano amalimbikitsidwa kuti adziwe ndalama zawo kuti athandizire kuti adzilembetse msasa wawo komanso Youth Rally. Odzipereka, kuphatikizapo akatswiri azachipatala ndi alangizi akuluakulu, amathandiza popereka malo osungirako malo komanso poonetsetsa kuti msasa ukuyenda bwinobwino. LEAK ndi ndondomeko ya imelo yokhala ndi antchito a achinyamata a Rally kuti azikhala nawo pamsonkhanowo chaka chonse.
Kudyetsa Maulendo Odziwitsa Ma Tube
Gulu la Udziwitsira wa Tizilombo Ndilopanda phindu lomwe limatumikira m'dera la makolo ndi osamalira omwe akusamalira ana omwe alandira zakudya kudzera mu chubu. Zina mwa matenda ndi zochitika zomwe zingafunike tizilombo toyambitsa matenda zimaphatikizapo IBD, matenda a reflux a gastroesophageal (GERD), imperforate anus, matenda a Hirschsprung , ndi matenda omwe amabwera m'mimba.
Makolo ndi ana omwe amayendetsa moyo ndikugwiritsanso ntchito tizilombo toyambitsa matenda amadana ndi tsankho komanso kusamvetsetsana.
Gululi limapatsanso ndondomeko yofunika kwambiri yowonjezera zamagetsi, kuphatikizapo mtundu wa chubu, opaleshoni ndi ndondomeko, mayesero, zomwe zingafunikire kudyetsa makapu, ndi zakudya ndi zakudya. Kuonjezerapo, pali mauthenga ndi machenjerero kuchokera kwa makolo odziwa bwino momwe angagwirizanitsire chubu chodyera ku mabanja ndi kusukulu ndi mavuto ovuta.
Bungwe la Short Bowel Syndrome Foundation la Ana a New England, Inc. (SBSNE)
Bungwe la Short Bowel Syndrome Foundation la Ana a New England, Inc. (SBSNE) ndi gulu lopanda phindu lochokera ku Rhode Island lomwe limapereka chithandizo ndi chidziwitso kwa ana ndi makolo omwe ali ndi matenda afupipafupi (SBS) chifukwa cha matenda kapena chikhalidwe .
Makolo a ana omwe akukhala ndi SBS angathe kupempha chithandizo cha zinthu zomwe apatsidwa, zomwe zimaphatikizapo zinthu monga onesies, mabulangete, zipinda zam'madzi, ndi zinyama. SBSNE imasungiranso pulogalamu yowonjezerapo zopereka zomwe zopereka zoperekedwazo zingatengedwenso ku banja lina lomwe limakhala ndi SBS lomwe lingagwiritse ntchito.
Crohn ali mu Childhood Research Association (CICRA)
Crohn ali mu Childhood Research Association (CICRA) ndi chithandizo chochokera ku United Kingdom chothandiza ana ndi achinyamata komanso mabanja awo omwe akukhala ndi matenda a Crohn ndi ulcerative colitis. Poyambira pachiyambi monga Crohn's mu Childhood Research Association mu 1978, gululi limapereka chithandizo kwa odwala ndi mabanja awo, ndipo limapereka kafukufuku wopanga maubwenzi kuti akalimbikitse madokotala kuti alowe m'mabanja odwala .
CICRA imalandira ndalama kuchokera ku zopereka zapadera, kusonkhanitsa zochitika, ndi othandizira mafakitale. Ufulu ndi ufulu ndipo CICRA ikhoza kupereka mapepala odziwitsa odwala komanso ogwiritsidwa ntchito kusukulu. Zina mwazinthu zomwe zilipo kwa odwala ndizo:
- Telefoni (0208 949 6209) ndi imelo (support@cicra.org) kumene osowa thandizo angalandire chithandizo ndi chidziwitso
- CICRA Insider , ndondomeko yamakono yomwe ili ndi chidziwitso chokhudza kafukufuku wa Crohn's disease ndi ulcerative colitis komanso zochitika ndi chikondi
- Buku lofufuza kafukufuku wokhudzana ndi zochitika zatsopano zomwe zalembedwa ndi ana a gastroenterologist omwe amachititsa maphunziro atsopano a sayansi kukhala owona
- Cool Zone, malo a ana omwe akuphatikizapo gulu ndi mndandanda wa penti