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Ine ndi matuza anga
Ndine Lisa Irvine, ndili ndi zaka 43 ndipo ndimakhala ku East Kilbride, kunja kwa Glasgow. Ndimakhala ndi dominant dystrophic epidermolysis bullosa, kapena DDEB mwachidule.
Kukumbukira kwanga koyamba kwa EB yanga kunali pamene ndinali pafupi zaka 3. Ndikukumbukira kuti ndinapita ku chipatala kuti ndikachotse zomwe ankaganiza kuti panthawiyo zinali zochotsa njerewere m'manja ndi zala. Chipatala chomwe tidapitako chinali pafupi kuyamba kuwachotsa pogwiritsa ntchito njira yoziziritsa. Amayi anga amanjenjemerabe kuganiza za nthawiyi momveka bwino, sizinali njerewere koma matuza obwera chifukwa cha EB yanga. Mwamwayi anawauza kuti asiye chifukwa cha mmene ndinalili, kukuwa ndi kulira.
Nditayendera kangapo ku dipatimenti yathu ya A&E, kuwopseza chitetezo cha ana kuchokera kwa ogwira ntchito zachipatala, ndikuchotsedwa panyumba ndi anthu ogwira nawo ntchito chifukwa cha matuza anga akuwoneka ngati akuwotcha ndudu, amayi anga adapita mosimidwa kwa GP wathu, yemwe anali ndi sabata lomwelo. adakhala pamsonkhano wachipatala ndipo adamva za EB.
Mwamwayi, adazindikira ndipo adatumiza mwadzidzidzi kwa katswiri wa Dermatologist ku Edinburgh Royal Infirmary.
Atandiyesa, adapeza kuti ndinali ndi EB. Izi mothokoza zidatseka nkhani zonse zokhudzana ndi ntchito zachitukuko.
Chipatala cha Edinburgh ndiye chinali ndi chipatala chokha cha EB ku Scotland. Chipatalachi chinkachitika kawiri pachaka, ndipo gulu la anamwino limachokera ku Great Ormond Street Hospital (GOSH) ku London.
Mkatikati mwa zaka za m'ma 1980, m'modzi wa anamwino ochokera ku GOSH, adayendera sukulu yanga ya pulaimale ndipo adandipatsa zida zothandizira anthu oyamba komanso kupereka malangizo ambiri kwa ogwira ntchito kusukulu.
Kunali kusankha kovuta kwa makolo anga; kundilola kukhala mwana kapena kukhala mwana wokhala ndi EB. Chifukwa cha zisankho zomwe zidapangidwa panthawiyo, ndinali woletsedwa kwambiri kuchita nawo masewera olimbitsa thupi, ndikumvetsetsa chifukwa chake.
Ndili wachinyamata, ndinapanduka ndipo ndinaganiza kuti ndikhoza kupita ku skating pa ice. Izi zidandipangitsa kukhala ndi matuza opitilira 15 phazi lililonse!
Kupeza chithandizo chamankhwala chapadera chomwe ndimafunikira kwanuko kunali kovutirapo chifukwa chosazindikira komanso kumvetsetsa za matendawa komanso chifukwa akatswiri azachipatala anali asanaphunzitsidwe machitidwe enaake a chisamaliro cha EB motero ndife otsimikiza ndi zinthu monga kutungira ndi kuvala matuza anga.
Pa nthawi ina, malemu bambo ndi agogo anga anapeza kuti khungu lawo tcheru ndi zipsera anali kwenikweni EB nawonso. Kudzera mwa iwo ndinatengera jini.
Pambuyo pake, chipatala cha EB chinatsegulidwa ku Yorkhill Children's Hospital ku Glasgow. Zimenezi zinapangitsa kuti zinthu zikhale zosavuta, popeza ndinali ndi mphindi 20 zokha pagalimoto.
Mu 1999, ndinabereka mwana wanga wamkazi wokongola dzina lake Rachel, yemwenso anatengera DDEB. Ndikhoza kumva chisoni ndi amayi anga pa mayesero ndi masautso akulera mwana ndi EB. Sizophweka ndipo nthawi zonse mumakayikira zisankho zomwe mumapanga.
Kuchokera paubwana wokulirapo ndi EB komanso kukhala ndi chithandizo chochepa kuchokera ku chithandizo chamankhwala apadera, kukhala kholo la mwana yemwe ali ndi EB lero, kusiyana kuli usiku ndi usana. Mwamwayi zinthu zinali zitapita patsogolo pankhani ya chithandizo cha mano, chipatala chapansi, ndi kadyedwe. Ndipo ndithudi pali DEBRA omwe amapereka zambiri mwa njira yothandizira maganizo, zothandiza komanso zamagulu. Kukhala wokhoza kupeza zinthu zonsezi kwakhala kwamtengo wapatali.
Monga EB sinali ndipo sichidziwikabe, si onse azachipatala omwe akufuna kukuchitirani chithandizo. Izi zinapangitsa kuti ndipite ku chipatala cha St Thomas' ku London kuti ndikawonjezeke. M'mawu ena kukulitsa kum'mero kwanga chifukwa chochepa kuchokera ku matuza ndi zipsera zogwirizana ndi vuto langa.
Ndili kumeneko, ndinali ndi mwayi kuona kusiyana mlangizi mmodzi ndi mmodzi EB namwino ku Scotland kuti EB wapamwamba likulu, kumene muli ndi mwayi unyinji wa ntchito zonse pansi pa denga limodzi.
Gulu lachipatala la Scottish EB lasintha kwambiri moyo wanga. Thandizo lomwe madokotala anga anali nalo ndisanandichitire maopaleshoni anayi akuluakulu kuchokera kwa namwino wanga wa EB, mlangizi komanso ku DEBRA zinali zamtengo wapatali. Chifukwa cha chithandizo chawo kuchira kunakhala kosavuta, ndipo chisamaliro cha chilonda chinachitidwa bwino. Ndikungokhulupirira kuti chithandizo cha akatswirichi chidzakhalapo kwa mibadwo yamtsogolo.
Tsopano ndili mu 2nd chaka chochotsa matuza m'maso mwanga monga mwapadera kwambiri. Kukhala ndi EB sikukupangani kukhala patsogolo. Tsiku lililonse mutha kukumana ndi zovuta, koma timangotulutsa matuza ndikupitilira. Ndine wothokoza kuti ndili ndi banja londithandiza kwambiri, GP, mlangizi ndi gulu ku DEBRA omwe amakhalapo nthawi zonse kuti andithandize.
Ndikukhulupirira kuti izi zapereka chidziwitso chaching'ono cha momwe kukhala ndi EB kulili komanso momwe kusintha kumatikhudzira.