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 lipoti lathu la 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 pa EB yolamulira ndi yobwerera m'mbuyo.
DEBRA International, bungwe lalikulu la netiweki yapadziko lonse ya mabungwe othandiza anthu osowa thandizo la EB, likupereka mndandanda wa mitundu yonse yosowa apa.
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 apeza mitundu inayi ya 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.
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 mukuganiza kuti inu kapena wachibale wanu ali ndi EBS, mutha kufunsa dokotala wanu kuti akutumizireni kwa katswiri ndipo mukangozindikira matendawa, mutha kulumikizana ndi Gulu Lathu Lothandizira Anthu ku EB kuti akuthandizeni. Gulu lathu likufuna kuthandiza anthu onse a EB mosasamala kanthu za mtundu kapena kuopsa kwa matendawa, tili ndi njira zosiyanasiyana zothandizira, zamaganizo komanso zachuma. Lumikizanani nafe kuti mudziwe zambiri za momwe tingathandizire anthu omwe ali ndi EB, mabanja awo ndi osamalira.
"Nditabadwa DEBRA kunalibe ndipo sindinapezeke ndi EB mpaka ndili ndi zaka za m'ma 20. Pamene DEBRA inayamba, thandizo lawo linasintha kwambiri. Ndiwo omwe adandithandiza kwambiri kuti ndipeze ufulu wodziyimira pawokha komanso kumvetsetsa bwino vutoli. Utumiki wa DEBRA EB Community Support umakhudza nkhani zosiyanasiyana zomwe sunathe kuziganizira zaka zoposa 40 zapitazo, kuyambira kuthandiza ndi ma fomu opempha nyumba mpaka kupereka chithandizo cha matenda 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 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.