Epidermolysis bullosa simplex (EBS)
EB simplex (EBS) 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.
EBS ndi mtundu wa EB wofala kwambiri komanso wochepera kwambiri pomwe mapuloteni omwe akusowa, omwe nthawi zambiri amatha kulumikizana ndi khungu, amapezeka kumtunda kwa khungu - epidermis. Pafupifupi 70% ya anthu omwe ali ndi EB ali ndi EBS.
Chonde werengani athu EBS Impact Report kuti mudziwe njira zosiyanasiyana zomwe timathandizira mamembala omwe ali ndi EBS.
"Kwa ine kukhala ndi EB Simplex, imakhudza kwambiri manja anga ndi mapazi anga, kotero khungu limagawanika ndi matuza mosavuta, choncho nthawi zina ndimayenera kugwiritsa ntchito njinga yanga ya olumala chifukwa sindingathe kuvala masokosi kapena kuyimirira kapena kuchita chilichonse. .”
Heather
Amakhala ndi EB simplex (EBS)
Za EB simplex
Munthu aliyense ali ndi makope awiri a jini iliyonse, kusintha kwa jini komwe kumayambitsa EB kungakhale mumtundu umodzi kapena onse awiri. Komabe, EBS nthawi zambiri imatengera cholowa, kutanthauza kuti jini imodzi yokha mwa awiriwa imakhudzidwa.
Mitundu yodziwika bwino ya EB nthawi zambiri imakhala yocheperako kuposa yochulukirapo, chifukwa chake EBS nthawi zambiri imakhala yocheperako kuposa mitundu ina, ngakhale pali mitundu ina ya EBS yosowa.
Dziwani zambiri za kusiyana pakati pawo EB yolamulira komanso yokhazikika.
DEBRA International, bungwe lapakati pa netiweki yapadziko lonse lapansi ya mabungwe othandizira a EB imapereka mndandanda wamitundu yonse yosowa pano.
Zizindikiro zimatha kusiyana kwambiri pakati pa anthu okhudzidwa koma matuza amangokhala m'manja ndi kumapazi ndipo matuza amatha kuchira popanda kusiya zipsera, zomwe sizili choncho ndi mitundu ina ya EB, koma hyperpigmentation (kuda kwa khungu) kumatha kuchitika pamalopo. cha chithuza.
Kutuluka matuza ndi kuyabwa kogwirizanako kungaipitse kwambiri chifukwa cha kutentha, chinyezi ndi thukuta. Hyperkeratosis (kukhuthala kwa khungu) kumatha kuchitika komwe kungakhudze kuyenda, kusokonezeka kwa misomali (kusokoneza ndi kusinthika) ndi milia (ting'onoting'ono toyera) ndizofalanso mu EBS.
Ofufuza azindikira 4 mitundu yaying'ono EB simplex:
- Localized EBS (M'mbuyomu umadziwika kuti mtundu wa Weber-Cockayne) umadziwika ndi matuza pakhungu omwe amapezeka nthawi iliyonse pakati pa ubwana ndi ukalamba ndipo nthawi zambiri amakhala m'manja ndi mapazi okha. Pambuyo pake, khungu la manja ndi mapazi likhoza kulimba komanso kuumitsa (hyperkeratosis)
- EBS Intermediate (poyamba linkadziwika kuti EBS Generalized Intermediate kapena Koebner type) limalumikizidwa ndi matuza omwe amapezeka kuyambira ali mwana kapena ali wakhanda. Kutupa kumakonda kukhala kowopsa kuposa Localized EBS koma kucheperako EBS Severe.
- EBS Kwambiri (yomwe poyamba inkadziwika kuti EBS Generalized Severe kapena Dowling-Meara EBS) ndi mtundu woopsa kwambiri wa EB Simplex kumene matuza aakulu amatha kuchitika paliponse pathupi, kuphatikizapo mkamwa. Matuza amayamba kukhalapo kuyambira kubadwa ndipo amatha kupita patsogolo ndi ukalamba koma okalamba amathanso kukhudzidwa ndi hyperkeratosis. Kuopsa kwake komanso kuchuluka kwa matuza kumasiyanasiyana kwambiri ndipo zikavuta kwambiri zimatha kupha munthu akamakhanda.
- EBS yokhala ndi ma pigmentation ndi mtundu wachinayi wa EB Simplex pomwe fragility ya khungu imakhalapo pakubadwa ndipo pakapita nthawi mtundu wa bulauni wophatikizidwa ndi mawanga umayamba pathupi. The pigmentation akhoza kuchepetsa ndi kutha mu moyo wamkulu.
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 mukuganiza kuti inu kapena wachibale wanu muli ndi EBS, mukhoza kufunsa dokotala wanu kuti akutumizireni ku a katswiri ndipo mukakhala ndi matenda, mutha kulumikizana ndi EB yathu Gulu Lothandizira Anthu 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. Lumikizanani kuti mudziwe zambiri za momwe tingathandizire anthu omwe ali ndi EB, mabanja awo ndi owasamalira.
"Pamene ndinabadwa DEBRA kunalibe ndipo sindinapezeke ndi EB mpaka zaka zapakati pa makumi awiri. DEBRA itabwera, thandizo lawo linapanga kusiyana kwakukulu. Iwo ndi amene amandithandiza kwambiri kuti ndikhale wodziimira payekha komanso kuti ndimvetse bwino mmene zinthu zilili. DEBRA EB Thandizo la Community Ntchitoyi imakhudza zinthu zingapo zomwe sizinathe zaka 40 zapitazo, kuyambira pothandizira ntchito zanyumba mpaka popereka chithandizo chamankhwala amisala. ”
Jo, wodalirika wa DEBRA wokhala ndi EBS
Ngati muli ndi EBS, mutha kugwiritsa ntchito khadi lathu la 'Ndili ndi EBS'. 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.