Kindler epidermolysis bullosa (KEB)
Kindler EB (KEB) ndi imodzi mwa mitundu inayi ikuluikulu ya epidermolysis bullosa (EB), matenda opweteka a majini omwe amachititsa kuti khungu lizing'ambika kapena kuphulika pang'ono. Mitundu inayi ikuluikulu ya EB imayambitsidwa ndi kusintha kwa majini, komwe kumabweretsa mapuloteni olakwika kapena osowa m'magawo osiyanasiyana a khungu komanso 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 pa EB yolamulira ndi yobwerera m'mbuyo.
Matenda a Kindler EB (omwe kale ankatchedwa Kindler Syndrome) ndi osowa kwambiri, ndipo ngakhale amatha kukhala oopsa, nthawi zambiri moyo wabwinobwino umakhala wotheka. Pali njira zosiyanasiyana zothandizira 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.
Pakadali pano palibe mankhwala a EB, ntchito yathu ku DEBRA ikufuna kusintha izi. Komabe, pali mankhwala omwe alipo omwe amathandiza kuthana ndi ululu ndi kuyabwa . Timathandizira mapulojekiti ofufuza omwe cholinga chake ndi kupeza mankhwala ena komanso mankhwala, ndipo Gulu lathu Lothandizira Anthu a EB ladzipereka kuthandiza odwala ndi mabanja kuthana ndi mavuto omwe EB imabweretsa.
Ngati inu kapena wachibale wanu mwapezeka ndi matenda a Kindler EB, mutha kulumikizana ndi Gulu Lothandizira la Anthu kuti mupeze chithandizo china. Gulu lathu likufuna kuthandiza anthu onse a EB mosasamala kanthu za mtundu kapena kuopsa kwa vutoli, tili ndi njira zosiyanasiyana zothandizira, zamaganizo 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 mtundu wa digito wa khadi womwe mungathe kutsitsa apa ndikusunga ngati chithunzi pafoni yanu.
Ngati mukufuna khadi yokhala ndi chikwangwani cha katundu, chonde lankhulani ndi gulu lathu la Umembala kuti mupemphe imodzi.