Kupweteka ndi kuyabwa kwa odwala EB
Panopa palibe mankhwala a epidermolysis bullosa (EB) ndipo ku DEBRA UK tikuyesetsa kuti tisinthe izi. Komabe, pali mankhwala omwe angathandize kuchepetsa ululu wa EB ndi kuyang'anira kuyabwa, komanso zizindikiro zina. Gulu lanu la akatswiri azachipatala la EB lizitha kukulangizani mankhwala omwe ali oyenera pazochitika zilizonse, koma pansipa pali chidule cha zomwe zimayambitsa ndi machiritso azizindikiro ziwirizi.
Ngati simuli pansi pa gulu la akatswiri azachipatala la EB, chonde funsani GP wanu kuti akulozeni. Mutha kudziwa zambiri zakupeza chithandizo chamankhwala cha akatswiri, kuphatikiza kalata yathu yotumizira ma template yomwe mungagwiritse ntchito, patsamba lathu loyang'anira chithandizo chamankhwala.
Tsambali lilinso ndi zambiri zamathandizo athu azandalama omwe amapereka zinthu zosiyanasiyana, kuphatikiza zinthu monga mafani ndi zinthu zaukadaulo zomwe zimathandizira kuchepetsa zizindikiro za EB.
Zamkatimu
1. Zomwe zimayambitsa ululu
2. Kusintha kwa mavalidwe
3. Matenda
4. Kupsinjika maganizo ndi kugona
5. EB kuchepetsa ululu
6. Kusamalira kuyabwa kwa EB
7. Ndalama zothandizira za DEBRA UK
8. Zothandizira zowonjezera
Zomwe zimayambitsa ululu
Pali zifukwa zambiri zovuta zomwe anthu omwe ali ndi EB amamva ululu. Kudziwa chomwe chimayambitsa kupweteka n'kofunika kuti malangizo abwino ochepetsera ululu aperekedwe. Ngati mukumva kuwawa ndipo mukusowa thandizo, gulu lanu lachipatala la EB lidzatha kukulangizani ndikukuthandizani kuthetsa ululu.
Kuti mupeze chithandizo chamalingaliro ndi chithandizo chothandizira, monga chithandizo chandalama chothandizira zinthu zomwe zingathandize ndi ululu ndi kuyabwa, chonde lemberani Gulu lathu la EB Community Support Team.
Zina mwazifukwa zopweteka kuchokera ku EB ndi:
- Malo a matuza ndi machiritso a matuza.
- Madera otaya khungu.
- Mabala otseguka.
- Zilonda pa mucous nembanemba (minofu yomwe imatulutsa mamina ndi mizere mabowo ndi ziwalo, mwachitsanzo mkamwa, zikope, m'mimba, ndi zina zotero), cornea (mbali yakutsogolo kwa diso), komanso zosagwirizana ndi khungu (zosagwirizana ndi khungu).
- Matenda.
- Kugwiritsa ntchito mavalidwe olakwika kapena mankhwala apamutu.
- Zovala zikasinthidwa.
- Kutuluka m'kati.
- Kuvulala pakhungu ngati kupaka kapena kuphulika.
- Kutentha kwambiri.
- Kumverera kwa zinthu monga zotsukira zovala ndi zochotsera fungo.
- Zida zobvala.
- Zomwe zimayambitsa.
Mukadziwa chifukwa chomwe mukumva ululu (ngakhale pali zifukwa zosadziwika), mukhoza kugwira ntchito ndi gulu lanu lachipatala la EB pokonzekera mpumulo wa ululu wa EB.
Magawo otsatirawa amapereka malangizo ena ochepetsera ululu kwa anthu omwe ali ndi EB. Komabe, zomwe zimagwirira ntchito kwa munthu m'modzi sizingagwire ntchito kwa wina, choncho nthawi zonse muyenera kufunafuna upangiri kuchokera ku gulu lanu lazaumoyo za momwe mulili komanso mtundu wa EB.
Kusintha kwa EB kavalidwe
Kusintha kwa kavalidwe kofunikira kuti muzitha kuyang'anira EB kungakhale kovutitsa kwambiri komanso kowawa, komabe ndi gawo la moyo wonse komanso lofunikira pakusamalira khungu nthawi zonse (nthawi zina tsiku lililonse), kusamalira mabala ndi matuza.
Matuza ayenera kudulidwa mwachangu momwe angathere kuti asabweretse ululu ndi kuwonongeka; matuza akulu = mabala akulu. Kupangika kwa matuza ndi kuwonongeka kwa khungu kungayambitse kupweteka kwakukulu, ngakhale kuti anthu ena omwe ali ndi EB amakhalanso ndi ululu pamene alibe matuza. Chiphuphu chikang'ambika, chiyenera kuvalidwa kuti chiteteze bala pamene khungu likuyesera kuchira.
Mungapeze zambiri zokhuza kusamalira matuza pakhungu lathu komanso tsamba losamalira mabala, ndi ulalo wotsogolera odwala ku DEBRA International mu zothandizira gawo pansi pa tsamba lino.
"Chinthu chovuta kwambiri pa EB ndikuwona mwana wanu akumva zowawa, podziwa kuti chisamaliro chomwe mumapereka chikuyambitsa nkhawa." Katie, amayi kwa Jamie yemwe ali ndi EB yovuta
Nthawi yomwe imatengedwa kuti mutsirize kusintha kwa mavalidwe imatha kusiyana kwambiri, kotero kuti muchepetse ululu ndikofunikira kuti mumalize kusintha kavalidwe munthawi yochepa. Pali zobvala zosiyanasiyana zomwe zilipo, ndipo kusankha zovala zoyenera ndizofunikira. Mwachitsanzo, ana obadwa kumene omwe akhudzidwa kwambiri amafunikira kusamalidwa pang'ono ndipo angafunikire kuvala zomwe zitha kukhalapo kwa masiku angapo. Komanso, zovala zosamata ndizofunikira kuti muchepetse kuwonongeka ndi kupweteka. Ngati zomatira zagwiritsidwa ntchito molakwika, pali zinthu zochotsa zomatira zomwe zitha kuchepetsa kuwonongeka kwa khungu.
Magulu odziwa zachipatala a EB ali ndi ukatswiri wambiri m'derali ndipo azitha kukulangizani za dongosolo loyenera la chithandizo pazochitika zilizonse. Mukhoza kulankhulana ndi katswiri wa zaumoyo, kapena ngati mulibe mwayi wopeza katswiri wa EB, chonde Lumikizanani ndi Gulu lathu la EB Community Support Team amene angasangalale kukuthandizani ndi zotumizira.
Mutha kudziwanso zambiri zamavalidwe operekera kunyumba omwe mungagwiritse ntchito, monga Bullen Healthcare, patsamba lathu tsamba loyang'anira chithandizo chamankhwala.
Kutenga
Mabala otseguka kapena khungu lofiira limatha kutenga kachilombo ndipo lingafunike chithandizo chachangu kuti mupewe kupweteka komanso kuwonongeka. Matenda a streptococcal (bacterial) amatha kukhala opweteka kwambiri. Chimodzi mwazinthu zomwe zimayambitsa matenda ndi kusaukhondo m'manja, motero kusamba m'manja ndi zida zoyera ndikofunikira pochotsa matuza ndikusintha mavalidwe.
Zizindikilo zosonyeza kuti malo ena apakhungu akhudzidwa ndi izi:
- Kufiira ndi kutentha kuzungulira dera.
- Malo akutuluka mafinya kapena kutuluka kwamadzi.
- Kutsika pamwamba pa bala.
- Chilonda chosachira.
- Mzere wofiira kapena mzere wofalikira kutali ndi chithuza, kapena kusonkhanitsa kwa matuza.
- Kutentha kwakukulu (kutentha thupi) kwa 38C (100.4F) kapena pamwamba.
- Fungo lachilendo.
Lankhulani ndi GP wanu kapena wothandizira zaumoyo mukawona chizindikiro choyamba cha matenda. Chithandizo chitha kuphatikiza mafuta opha tizilombo, maantibayotiki, ma gels, mavalidwe apadera komanso chithandizo chanthawi yayitali mutha kulimbikitsa chitetezo chamthupi kudzera muzakudya ndi zakudya zowonjezera. Chakudya ndichofunika makamaka chifukwa zakudya zimatha kutayika kudzera mumadzimadzi am'mabala. Lankhulani ndi katswiri kuti mukambirane dongosolo labwino kwambiri lazakudya zanu chifukwa upangiri wazakudya kwa anthu omwe ali ndi EB ukhoza kusiyana ndi wa anthu opanda EB.
Kupanikizika ndi kugona
Kupsinjika maganizo ndi kusowa tulo kungakhale vuto pamene mukulimbana ndi mabala opweteka ndipo zingakhudze machiritso a EB ndi kutha kuthana ndi ululu. Zizindikirozi zitha kuwongoleredwa pogwiritsa ntchito njira zowongolera kupsinjika, zopatsa thanzi, mankhwala, kusinkhasinkha, kulingalira ndi njira zina zaumoyo.
Gulu lanu lazaumoyo lidzatha kukuthandizani kuti mupeze chithandizo choyenera kwa inu ndipo pali maulalo ena omwe ali pansipa kuti mupeze chithandizo chowonjezera, monga Malangizo amalingaliro othana ndi vuto la kugona.
athu thandizo thandizo angaperekenso zinthu zomwe zingathandize kugona, monga mafani kuti akuthandizeni kuti mukhale ozizira, makamaka nyengo yotentha, ndi zokopa za nkhosa kuti muchepetse kukangana pakhungu.
EB kuchepetsa ululu
Pali njira zambiri zosiyana zothandizira kupweteka kwa EB malingana ndi mtundu ndi kuuma kwa ululu, kuphatikizapo mafuta odzola, ma gels, mankhwala a pakamwa ndi kuthandizira maganizo.
Nthawi zina, ndi EB yocheperako, mankhwala opweteka osagwiritsidwa ntchito ngati paracetamol angapereke mpumulo, koma nthawi zambiri mankhwala amphamvu amafunikira ndipo amapezeka kudzera mwa opereka chithandizo. Morphine atha kuperekedwa, makamaka asanasinthe mavalidwe, ndipo oral sucrose solution yawonetsa kuti ndi yothandiza musanayambe komanso panthawi yomwe makanda obadwa kumene.
Chonde dziwani, a NHS amalangiza kuti ana osakwana zaka 16 sayenera kupatsidwa aspirin chifukwa pali chiopsezo chochepa chomwe chingayambitse matenda aakulu otchedwa Reye's Syndrome.
Kuchepetsa nthawi yotengera kusintha kwa mavalidwe ndi kusankha zovala zoyenera ndi zipangizo kungathandize kuchepetsa ululu. Mutha kugwiritsanso ntchito ma templates kuti mudule zovala pasadakhale, chifukwa chake muchepetse nthawi yomwe munthuyo amakumana ndi zovuta.
Anthu ena okhala ndi EB amapeza kuti kuchita zinthu zomwe amasangalala nazo, monga kumvetsera nyimbo, kukhala ndi nthawi yocheza ndi ena, kutuluka panja, kusewera masewera kapena kuonera TV kumapereka zosokoneza zothandiza. Kugwiritsa ntchito malingaliro ndi njira zopumira pakati pa njira zina zaubwino zingathandizenso.
Magulu omwe ali m'zipatala zachipatala za EB akhoza kukuthandizani ndi njira zothandizira kupweteka kapena ndondomeko yazovuta zosamalira ululu. Ali ndi zochitika zambiri m'derali ndipo ngakhale ululu wanu uli wochepa kapena waukulu, ayenera kukuthandizani. Gawo lazinthu pansipa lirinso ndi maulalo ku mabungwe omwe amapereka chithandizo pa njira zothandizira kupweteka.
Njira yathu yofufuzira imayesetsa kupeza machiritso ndikupereka chithandizo chamankhwala chothandiza cha mitundu yonse ya EB, kuti tithe kuwongolera moyo wa anthu onse amtundu wa EB. Chonde pitani patsamba lathu la kafukufuku kuti mumve zambiri zamapulojekiti athu apano.
Kuwongolera kuyabwa kwa EB
“Chimodzi mwazinthu zomwe zimandikhumudwitsa kwambiri ndi kuyabwa. Zimakhala ngati thupi langa lonse likupsa ndi moto ndipo nyerere zikungoyenda paliponse. Ndizovuta kwambiri ndipo palibe amene alibe EB angamvetse momwe kuyabwaku kuli koipa. ” Maya, yemwe ali ndi recessive dystrophic EB ndipo ndi Ambassador wa DEBRA UK
Kuyabwa (pruritus) kumatanthauzidwa ngati “chizindikiro chosasangalatsa chomwe chimayambitsa kukanda.”
Ndi EB, kuyabwa kumatha kukhala kowawa kwambiri. Kukanda, komwe kungakhale kovuta kukana, kungayambitse ngozi yatsopano yapakhungu ndipo kungayambitse kuwonongeka kwa mabala omwe atsala pang'ono kuchira. Kukanda kungayambitsenso kutupa, komwe kumalimbitsanso kuyabwa.
Zina zomwe zimayambitsa kuyabwa ndi:
- Kuchiritsa matuza.
- Khungu louma.
- Kutentha kwambiri.
- Kutupa.
- Kuwonongeka kwapakhungu kosalekeza chifukwa chobweranso matuza pamalo omwewo.
- Kuperewera kwa magazi m'thupi.
- Ma opiates/opioid ena amatha kukulitsa kuyabwa.
- Kukhudzika kwa zinthu monga zotsukira zovala, ma deodorants ndi zinthu zina zomwe zimakumana ndi khungu.
- Kupsinjika kumatha kukulitsa kuyabwa - chonde onani gawo lowonjezera pansipa kuti muthandizire kuthana ndi nkhawa.
- Zifukwa zina zosadziwika kapena kuphatikiza kwazinthu.
Kusamalira bwino khungu ndikofunikira pochepetsa kuyabwa. Mutha kupeza malangizo ambiri patsamba lathu losamalira khungu ndi mabala. Ngakhale kuti chilakolako chofuna kukanda chimakhala chovuta kuchikana, anthu ena amapeza kuti kugwedeza malo mofatsa ndi nsalu yonyowa yoziziritsa kumapereka mpumulo kapena kusamba madzi ozizira. Ngati kuuma kumafunika, pali mankhwala omwe amapezeka monga mafuta odzola komanso odzola.
Upangiri wina wothandiza pakuchepetsa kuyabwa mu EB ndi monga kuonetsetsa kuti muli ndi madzi okwanira, kupewa kutentha kwambiri komanso kusamala ndi zinthu zomwe zimakhudzana ndi khungu lanu. Njira zopumula, kupuma ndi kulingalira zingapereke mpumulo, nthawi zambiri kuphatikizapo chithandizo chamankhwala ndi makhalidwe ena. Mayankho osiyanasiyana amagwira ntchito kwa anthu osiyanasiyana kotero ndikwabwino kukambirana zosowa zanu ndi gulu lanu lazaumoyo.
Zothandizira za DEBRA UK
Timapereka ndalama zothandizira ndalama zosiyanasiyana zothandizira mamembala athu kuti akhale ndi thanzi labwino pa nthawi yamavuto azachuma kapena pozindikira ndalama zowonjezera zokhala ndi EB. Mamembala atha kulembetsa ndalama zogulira zinthu zosiyanasiyana, kuphatikiza maulendo ndi malo ogona kuti athandizire kupezeka pamisonkhano yofunika yachipatala ya EB, zopereka zokhala m'nyumba zathu zatchuthi, ndi zinthu zapadera zothandizira kuchepetsa zina mwazizindikiro za EB ndikukhala moyo. zambiri paokha.
Chonde onani chidule chathu chothandizira thandizo kuti mudziwe zambiri, kuphatikiza chidule cha zopereka zomwe timapereka ndi zitsanzo ndi njira zathu zoyenerera.
Kabuku kofufuza za Laboratory
Chitsogozo chokwanira cha kuyezetsa ndi kuzindikira kwa anthu omwe ali ndi EB patsamba la DEBRA International.webusaiti NHS
Zambiri pa EB ndi matenda.Zochita pa Ululu
Thandizo lambiri ndi malangizo kwa anthu omwe akukhudzidwa ndi ululu wosatha.Nkhawa ya Ululu
Pain Concern ikufuna kukonza miyoyo ya omwe ali ndi zowawa komanso omwe amawasamalira.Kusinkhasinkha
Kusinkhasinkha kwaulele kuti muchepetse ululu.Mind
Thandizo lomwe limapereka chithandizo chambiri chaumoyo wamaganizidwe, kuphatikizapo kuthana ndi mavuto ogona.Tsamba losindikizidwa: Okutobala 2024
Tsiku lobwereza lotsatira: Marichi 2026