Kindler epidermolysis bullosa (KEB)
Kindler EB (KEB) ndi imodzi mwa mitundu inayi yayikulu ya epidermolysis bullosa (EB), chibadwa chowawa chomwe chimapangitsa khungu kung'ambika kapena matuza pakakhudza pang'ono. The mitundu inayi ikuluikulu ya EB amayamba chifukwa cha kusintha kwa majini, komwe kumabweretsa mapuloteni olakwika kapena osowa m'magulu osiyanasiyana a khungu ndipo nthawi zina ziwalo zamkati.
Kindler EB ndiye mtundu wosowa kwambiri wa EB wobadwa nawo. Kutupa kumatha kuchitika m'magulu onse akhungu kapena ziwalo zamkati koma kumakhudza malekezero.
Za Killer EB (KEB)
Munthu aliyense ali ndi makope awiri a jini iliyonse, kusintha kwa jini komwe kumayambitsa EB kungakhale mumtundu umodzi kapena onse awiri. Komabe, Kindler EB amatengera mochulukira kutanthauza kuti majini onse awiriawiri - amodzi kuchokera kwa kholo lililonse - amakhudzidwa.
Recessive EB nthawi zambiri imakhala yowopsa kuposa mitundu yayikulu ndipo imatha kudabwitsa kwambiri chifukwa makolo amatha kukhala onyamula popanda kuwonetsa okha. Mwayi woti mwana atenge cholowa cha Kindler EB ndi 25%.
Dziwani zambiri za kusiyana pakati pawo EB yolamulira komanso yokhazikika.
Kindler EB (omwe kale anali Kindler Syndrome) ndi osowa kwambiri, ndipo ngakhale amatha kukhala ovuta, nthawi zambiri amakhala ndi moyo wabwinobwino. Mtundu wa mankhwala zilipo kuti zithandize ndi zizindikiro:
- Kutuluka matuza kumatha kukhudza thupi lonse kuphatikiza ziwalo zamkati koma kumakhala kowopsa kwambiri m'manja, kumapazi ndi kunyowa monga maso, matumbo, kummero, mkamwa, mkodzo ndi kumaliseche.
- Nthawi zambiri pamakhala kukhudzidwa kwakukulu kwa kuwala kowala, kutanthauza kuti khungu limatha kutentha mosavuta padzuwa.
- Kusintha kwa khungu ndi hyperkeratosis (kukhuthala kwa khungu) kumatha kuchitika pamapazi ndi kanjedza.
- Gingivitis (matenda a chingamu) ndi ofala ndipo matuza mkamwa amatha kupangitsa kudya kukhala kosasangalatsa.
- Kutupa kwa matumbo nakonso kumakhala kofala, komwe kungakhudze chimbudzi.
- Pali chiopsezo chowonjezeka cha khansa yapakhungu yopanda melanoma.
Panopa palibe mankhwala a EB, ntchito yathu ku DEBRA ikufuna kusintha izi. Komabe, pali mankhwala lilipo zomwe zimathandiza ndi kasamalidwe ka ululu ndi kuyabwa. Timapereka ndalama zofufuza ndi cholinga chofuna kupeza mankhwala owonjezera komanso machiritso athu EB Gulu Lothandizira Anthu akudzipereka kuthandiza odwala ndi mabanja kuthana ndi zovuta zomwe EB imabweretsa.
Ngati inu kapena wachibale wanu mwapezeka ndi Kindler EB, mutha kulumikizana ndi athu ComMunity Support Team kwa chithandizo chowonjezera. Gulu lathu likufuna kuthandizira gulu lonse la EB mosasamala za mtundu kapena kuuma kwake, tili ndi njira zingapo zothandizira, zamalingaliro komanso zachuma.
"DEBRA sikuti imangotithandiza ndi EB komanso kutenga nthawi yothandizira osamalira omwe amawona nkhondo yatsiku ndi tsiku ya EB komanso omwe amakhudzidwa ndi EB."
Membala wa DEBRA
Ngati muli ndi KEB, mutha kugwiritsa ntchito khadi yathu ya 'Ndili ndi KEB'. Izi zimapangitsa kuti zikhale zosavuta kugawana ndi anthu mfundo zazikuluzikulu za mtundu wa EB wanu, monga akatswiri azachipatala ngati mukupita kukakumana.
Pali digito mtundu wa khadi kuti mungathe download pano ndikusunga ngati chithunzi pafoni yanu.
Ngati mungafune mtundu wa khadi lachikwama, chonde lumikizanani ndi gulu lathu la Amembala kupempha chimodzi.