Dystrophic epidermolysis bullosa (DEB)
Dystrophic EB (DEB) 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 imayamba chifukwa cha kusintha kwa majini, komwe kumabweretsa mapuloteni olakwika kapena osowa m'magawo osiyanasiyana a khungu komanso nthawi zina ziwalo zamkati.
DEB ikhoza kukhala yocheperako kapena yowopsa kutengera mtundu waung'ono. Zimakhudza gawo la pansi pa khungu - dermis, kumene matuza amapezeka.
"Mukakhala ndi EB, zinthu zambiri zimakhala zoletsedwa. Muyenera kuganizira chilichonse chomwe mumachita. Anthu ena sayenera kuganiza choncho.”
Fazeel
Amakhala ndi recessive dystrophic epidermolysis bullosa (RDEB).
Zokhudza dystrophic EB (DEB)
Munthu aliyense ali ndi makope awiri a jini iliyonse, kusintha kwa jini komwe kumayambitsa EB kungakhale mumtundu umodzi kapena onse awiri. DEB imatha kutengera cholowa mochulukira kapena mochulukira, mitundu yayikulu ya EB nthawi zambiri imakhala yocheperako kuposa yochulukirapo.
Dominant EB imatanthauza kuti atengera jini imodzi yolakwika kuchokera kwa kholo limodzi, lomwe limakhala jini yayikulu, pomwe jini ina mwa awiriwo ndi yabwinobwino.
Recessive EB ndi pamene munthu watengera majini awiri olakwika - imodzi kuchokera kwa kholo lililonse. Recessive EB nthawi zambiri imakhala yowopsa kuposa mitundu yayikulu ndipo imatha kudabwitsa kwambiri chifukwa makolo amatha kunyamula popanda kuwonetsa okha.
Pali mitundu iwiri yayikulu ya DEB yokhala ndi zizindikiro zosiyanasiyana. Matuza amawonekera pobadwa kapena atangobadwa kumene ndipo amatha kukhudza thupi lonse.
- Dominant Dystrophic EB (DDEB) Nthawi zambiri, matuza amatha kungokhala m'manja, m'zigongono ndi kumapazi, koma amathanso kufalikira. Zipsera, milia (ziphuphu zoyera), misomali yachilendo kapena yosowa ndizofala. A yachibadwa moyo n'zotheka ndi osiyanasiyana mankhwala zilipo kuti zithandize ululu ndi kuyabwa. Mwayi woti mwana akhale ndi DDEB ndi 50%.
- Recessive DEB (RDEB) - (omwe kale anali Hallopeau-Siemens RDEB) - amaonedwa kuti ndi imodzi mwa mitundu yoopsa kwambiri ya EB yokhala ndi matuza ambiri, kuphatikizapo mkati, zomwe zingakhudze maso, mmero, matumbo ndi chimbudzi chomwe chimapangitsa moyo wa tsiku ndi tsiku kukhala wovuta kwambiri. Zala ndi zala zimatha kuphatikizira pamodzi chifukwa cha chipsera chomwe chimayesa kuchiritsa matuza. Mwayi woti mwana alandire RDEB kuchokera kwa makolo onyamula ndi 25%.
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 DEB, mutha kulumikizana ndi Gulu lathu Lothandizira Anthu a EB kuti mupeze chithandizo china. Gulu lathu limathandiza anthu onse a EB mosasamala kanthu za mtundu kapena kuopsa kwa matendawa; tili ndi njira zosiyanasiyana zothandizira, zamaganizo komanso zachuma.
"Ndinazindikira koyamba za DEBRA atangobadwa mwana wathu wamwamuna woyamba Finn yemwe anabadwa ndi EB. Matendawa adatengera mbali yanga yabanja, ndipo pokhala wodwala matendawa, ndidazindikira ndili ndi pakati kuti ndinali ndi mwayi umodzi pawiri wopatsira jini.
Mwana wanga wamwamuna wachiŵiri, yemwe anabadwa patatha chaka chimodzi, nayenso anapezeka ndi vutoli. Zinali panthawi yonse yapakati, ndipo m'miyezi yoyamba yovuta kwambiri monga kholo latsopano, ndinazindikira za DEBRA ndi chithandizo chomwe amapereka kwa odwala EB. Ndinatsogoleredwa ndikuthandizidwa ndi gulu la anamwino a EB ndi alangizi a ana omwe amathandizidwa ndi DEBRA. Thandizo la DEBRA ku banja langa linapitirizabe pamene anyamatawo anasanduka ana aang'ono ndi kupitirira. DEBRA yakhala yothandiza kwambiri kuwathandiza kupeza ufulu wawo wodzilamulira. "
Simone, membala wa board of trustees, ndi DEB
Ngati muli ndi DEB, mutha kugwiritsa ntchito khadi yathu ya 'Ndili ndi DEB'. 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.