Epidermolysis bullosa (EB): Zizindikiro, chithandizo, ndi chisamaliro

Uwu ndi mtundu wofala kwambiri wa EB womwe umapezeka pa 70% ya milandu yonse. Zizindikiro za EBS zimasiyana kwambiri . Ndi EBS , mapuloteni osowa ndi kufooka kumachitika pamwamba pa khungu lotchedwa epidermis.

Dziwani zambiri za EB simplex

Zingakhale zochepa kapena zovuta ( kutengera ngati ndizofala kapena zotsalira). Mapuloteni ndi kufooka komwe kulibe kumachitika pansi pa nembanemba ya pansi , yomwe ndi gawo lopyapyala komanso lolimba lomwe lili m'minofu yambiri ya anthu . 25% ya milandu yonse ya EB ndi Dystrophic EB.

Dziwani zambiri za Dystrophic eb

Mtundu wosowa wa EB womwe umangokhala 5% yokha ya milandu yonse . Zizindikiro za JEB zimasiyana kwambiri ndipo zimachitika chifukwa cha kusowa kwa mapuloteni pakhungu. Kusakhazikika kwa F kumachitika ndi kapangidwe kamene kamasunga epidermis ndi dermis ( gawo lamkati la zigawo ziwiri zazikulu za khungu) pamodzi - nembanemba ya pansi.

Dziwani zambiri za junctional eb

KEB . Mtundu wosowa kwambiri wa EB (osakwana 1% ya milandu). Dzinali limatchulidwa chifukwa cha jini yolakwika yomwe imayambitsa chidziwitso chofunikira kuti puloteni ya Kindlin1 ipangidwe. Ndi KEB, kufooka kumatha kuchitika pamlingo wosiyanasiyana wa khungu.

Dziwani zambiri za KINDLER eb

• kukhudza kapena kukangana kungayambitse kumeta ubweya wa khungu ndi matuza kupanga, matuza sadziletsa okha kotero amayenera kuwongolera pafupipafupi kuti asakule.  
• kuchira kwa matuza kungayambitse kupweteka, kuyabwa kwambiri, ndi zipsera. 
• mu mitundu ina ya EB, matuza amatha kuchitika makamaka m'manja ndi kumapazi zomwe zimayambitsa mavuto ndi kuyenda / kuyenda, ndi ntchito zina za tsiku ndi tsiku. 
• mu mitundu yoopsa ya EB, matuza amkati monga mkati mwa pakamwa amatha kukhala ovuta kumeza ndipo pangakhale kuchepa kwa mphuno (pakhosi) ndi mpweya womwe ungafune thandizo lachipatala. 
• kufalikira kwa matuza ndi mabala kungapangitse khungu kukhala ndi kachilombo ngati silinasamalidwe bwino. 
• mitundu ina ya EB imatha kukhala ndi zipsera zazikulu, kusintha kwa mtundu wa khungu pakapita nthawi, komanso chiopsezo chotenga khansa yapakhungu.  
• kupangika kwa minofu ya zipsera kungayambitse zala ndi zala kuti zigwirizane pamodzi zomwe zingafunike thandizo lachipatala. 
• EB ikhoza kukhudza ziwalo zina mkati mwa thupi kuphatikizapo khungu kuphatikizapo mafupa ndi matumbo, zingayambitsenso zovuta zina zachipatala, kuphatikizapo kudzimbidwa, makamaka kwa ana chifukwa cha matuza pansi, komanso chifukwa ndi zotsatira za ena. mitundu ya painkiller. EB ingayambitsenso kuchepa kwa magazi m'thupi. Zotsatira za EB ndi multisystemic ndipo mumitundu yoopsa ya EB kachulukidwe ka mafupa imatha kukhudzidwa kwambiri. 

Zizindikiro ziwiri zomwe zimagwirizanitsidwa ndi EB ndi ululu ndi kuyabwa. Zizindikirozi zimachitika chifukwa cha matuza pafupipafupi komanso nthawi zina ochulukirapo omwe amatha kupezeka mthupi lonse komanso mkati chifukwa chosowa kapena ma protein achilendo omwe amayamba chifukwa cha jini yolakwika kapena yosinthika, zomwe zikutanthauza kuti khungu silimangirira pamodzi momwe liyenera kukhalira. .  

Pakalipano palibe mankhwala a EB koma pali njira zothandizira / mankhwala omwe amathandiza ndi ululu ndi kuyabwa komanso zizindikiro zina. Katswiri wanu wa zaumoyo wa EB adzatha kukulangizani mankhwala omwe ali oyenera kwa inu, koma pansipa pali mwachidule zomwe zimayambitsa ndi mankhwala a zizindikiro ziwirizi.

Pali zifukwa zambiri zovuta zomwe anthu omwe ali ndi EB amamva ululu ndipo kuzindikira chomwe chimayambitsa ululu ndikofunikira kuti upangiri wochepetsa ululu uperekedwe. Ngati mukumva ululu ndipo mukufuna thandizo, magulu apadera azaumoyo a EB azitha kukupatsani upangiri ndi kukuthandizani pakuwongolera ululu. Gulu Lothandizira Anthu a DEBRA EB lingakupatseninso chithandizo chothandiza komanso chamaganizo kuphatikiza ndalama zothandizira zinthu zomwe zingathandize ndi ululu ndi kuyabwa.

Zomwe zimayambitsa kupweteka ndi EB ndizo: 

• kuchiritsa matuza / matuza. 
• madera otayika khungu ndi mabala otseguka. 
• zilonda (malo a minofu yachilendo kapena yowonongeka) pa mucous nembanemba, yomwe ndi minofu yomwe imatulutsa ntchofu ndi mizere mabowo ndi ziwalo, zomwe zimaphatikizapo pakamwa, m'zikope, m'mimba, ndi cornea (mbali ya kutsogolo kwa diso). 
• matenda. 
• matuza amkati. 
• kuvulala pakhungu ngati kupukuta kapena kuphulika. 
• kutentha kwambiri. 
• zifukwa zosadziwika kapena zovuta zosagwirizana ndi khungu. 
• kugwiritsa ntchito mavalidwe olakwika kapena mankhwala apamutu.  
• kusintha kusintha. 
• kukhudzika ndi zinthu monga zotsukira zovala ndi zochotsera fungo. 
• zipangizo zobvala. 

Mukadziwa chifukwa chake mukumva ululu (ngakhale pali zifukwa zosadziwika), mutha kugwira ntchito ndi katswiri wanu wa zaumoyo wa EB pa dongosolo lochepetsera ululu. Pansipa pali malangizo ena ochepetsa ululu kwa anthu omwe ali ndi EB, komabe, zomwe zimagwira ntchito kwa munthu wina sizingagwire ntchito kwa wina, choncho nthawi zonse muyenera kufunsa upangiri kwa katswiri wanu wa zaumoyo wa EB pa vuto lanu.

Kuyabwa ndi kumverera kosasangalatsa komwe kumayambitsa kukanda. Kwa anthu omwe ali ndi EB, kuyabwa kungakhale kowawa kwambiri. Kukanda kumakhala kovuta kukana ndipo kungayambitsenso kuvulala kwapakhungu ndikupangitsa kuwonongeka kwa mabala omwe atsala pang'ono kuchira. Kukanda kungayambitsenso kutupa, komwe kumalimbitsanso kuyabwa. 

Zomwe zimayambitsa kuyabwa kwa odwala omwe ali ndi EB 

• kuchiritsa matuza.  
• khungu lowuma. 
• kutentha kwambiri. 
• kutupa. 
• kuwonongeka kwa khungu kosalekeza chifukwa cha kuyambiranso kwa matuza m'dera lomwelo.  
• ma opiates/opioids (mankhwala ochepetsa ululu) amatha kukulitsa kuyabwa. 
• kukhudzika ndi zinthu monga zotsukira, zochotsera fungo, ndi zinthu zina zomwe zimakumana ndi khungu. 
• kupsinjika kumatha kukulitsa kuyabwa - onani maulalo othandiza kuti mudziwe zambiri ndi zinthu zomwe zingakuthandizeni kuthana ndi nkhawa. 
• kuperewera kwa magazi zomwe zingakhale zotsatira za EB zomwe zimabweretsa kuyabwa. 
• osadziwika, kapena kuphatikiza zifukwa. 

Pazovuta kwambiri EB ikhoza kuwonekera kwambiri ndipo ingakhudze madera ambiri a thupi, komabe nthawi zina, mwachitsanzo EB Simplex, yomwe imakhala ndi 70% ya milandu yonse ya EB, ikhoza kukhala yocheperako komanso imakhudza madera ena okha. thupi monga mapazi. EB ingakhalenso chilema champhamvu chomwe chimatanthawuza kuti zotsatira za chikhalidwe pa munthuyo zikhoza kusintha. Mwachitsanzo, munthu m'modzi yemwe ali ndi EB sangafunike chithandizo chilichonse choyenda ndipo m'malo mwake apanga kusintha kofunikira kuti athe kuthana kapena kupewa matenda awo, komabe munthu wina yemwe ali ndi EB angafunikire chithandizo chakuyenda nthawi zina, ndipo wina akhoza kukhala nacho. kusowa pafupipafupi kwa chithandizo chakuyenda.

Mamembala athu adatiuza kuti EB ikhoza kumva ngati chilema chobisika chomwe chingapangitse zovuta zina chifukwa EB, mwa mitundu yake yonse, ikhoza kukhala yovuta kukhala ndi thupi komanso m'maganizo popanda kufunsidwa kapena kupangidwa kuti mumve ngati muyenera kufotokoza. chomwe chiri. Ichi ndichifukwa chake ndikofunikira kuti anthu ambiri adziwe ndikumvetsetsa EB.

Dziwani zambiri za EB ngati kulumala kobisika

Kwa anthu ambiri omwe ali ndi EB, kapena kusamalira munthu yemwe ali ndi EB, chisamaliro cha bala ndi gawo lalikulu la moyo watsiku ndi tsiku. Kudziwa momwe mungasamalire matuza ndi mitundu yosiyanasiyana ya mabala, kuchiza ululu ndi kuyabwa, kupewa, ndi kuchiza matenda komanso nthawi yofunsira upangiri wamankhwala ndizofunikira pakusamalira mabala a EB. 

Pali chithandizo chosiyanasiyana chothandiza anthu ndi mabanja kuthana ndi mavuto okhala ndi EB kuphatikizapo malo azaumoyo abwino kwambiri a EB komwe odwala okhala m'dziko lililonse mwa anayiwa angatumizidwe kuti akalandire chithandizo chamankhwala nthawi zonse. Akatswiri azaumoyo a EB m'malo awa, omwe ena mwa iwo amathandizidwa ndi DEBRA UK, ali ndi chidziwitso chambiri komanso odziwa bwino momwe angasamalire khungu, kuphatikizapo momwe angatulutsire matuza ndi mankhwala omwe alipo kuti achepetse zizindikiro. Mutha kupempha kuti mutumizidwe ku malo amodzi kudzera mwa dokotala wanu . Ngati dokotala wanu sakudziwa ngati angakutumizireni kapena simukudziwa zomwe mungapemphe, chonde funsani Gulu Lathu Lothandizira Anthu a EB lomwe lingakuthandizeni ndipo lingakupatseni chitsanzo cha kalata yogawana ndi dokotala wanu.

M'munsimu mungapeze zambiri zokuthandizani kusamalira matuza ndi kuchepetsa kuwonongeka kwa khungu, komanso maulalo azinthu zina zothandiza. 

Mbali yofunikira ya dongosolo lililonse lamankhwala kwa anthu omwe ali ndi EB ndikupewa kuvulala kapena kukangana kwa khungu kuti muchepetse kuchuluka kwa matuza motero kuchepetsa ululu, kuyabwa, ndi zipsera. Zomwe aliyense amakumana nazo ndi EB ndizosiyana pang'ono ndipo upangiri umasiyana malinga ndi kuuma ndi mtundu wa EB. Chifukwa chake tikulimbikitsidwa kuti mupeze chithandizo kuchokera kwa katswiri wazachipatala wa EB pazochitika zanu koma monga chitsogozo ndikulimbikitsidwa kuti: 

• chepetsani kuyenda mtunda wautali ndikuyesera kupulumutsa khungu/mapazi anu pamaulendo ofunikira ngati kuli kotheka. 
• yesetsani kupewa misozi ndi kukanda ndikupewa kupukuta khungu - makolo angafunikire kusintha momwe amanyamulira makanda ndi ana. 
• yesetsani kupeza zovala zabwino zomwe sizikupaka pakhungu ndi komwe mungathe, pewani misomali yambiri, ngati n'kotheka, valani ulusi wosalala wachilengedwe monga silika, nsungwi ndi thonje chifukwa izi zingathandize kuchepetsa kupsa mtima. 
• sungani khungu kuti likhale lozizira momwe mungathere. 
• sankhani nsapato zabwino zomwe zilibe zolimba mkati. Dziwani zambiri mu kalozera wa nsapato.
• gwiritsani ntchito zithandizo zilizonse ndi zosinthika zomwe gulu lanu lazaumoyo litha kukhala njira zosavuta monga ma insoles kapena chopondapo, kapena zothandizira kuyenda monga chikuku kapena njanji zogwirizira m'bafa. Nthawi zonse funsani katswiri wanu wa EB chifukwa zida zina kapena zothandizira kuyenda sizingakhale zoyenera kwa EB yanu. 
• funsani ena kuti aziganizira zosowa zanu. 

Anthu omwe ali ndi EB nthawi zambiri amanena kuti ululu wochokera ku kuwonongeka kwa khungu lawo ndi wofanana ndi kutentha kwa digiri yachitatu, ndipo nthawi zina, pakhoza kukhala kutayika kwakukulu kwa khungu m'malo akuluakulu. Chisamaliro chapadera chikufunika kuti muchepetse ululu, kuyabwa ndi zizindikiro zina zokhudzana ndi kutupa. Ngati simukudziwa momwe mungasamalire khungu lanu, kapena la munthu amene mukumusamalira, nthawi zonse pitani kwa katswiri. Mutha kupeza zambiri zolumikizirana ndi malo ochitira opaleshoni komanso zomwe mungachite pakagwa ngozi apa.

Gulu Lothandizira Anthu la DEBRA EB lingaperekenso upangiri wothandiza kuphatikizapo kudziwa ufulu wanu ndi maudindo a opereka maphunziro ndi olemba ntchito kuti atsimikizire kuti kuchepetsa ululu kungaperekedwe panthawi yoyenera. Kulankhula ndi anthu omwe ali pafupi nanu za EB kungakuthandizeninso kuthana ndi mavuto a thanzi la thupi ndi la maganizo omwe mumakhala nawo chifukwa chokhala ndi EB.

Kuti muthe kuthana ndi zizindikiro za EB mudzafunika zinthu zina ndi zinthu zina. Zomwe mukufunikira zimadalira mtundu ndi kuopsa kwa EB yanu, ndipo katswiri wa zaumoyo wa EB adzatha kukulangizani koma pansipa pali chisonyezero cha zipangizo ndi zinthu zomwe mungafunike: 

• lumo. Malumo akuthwa adzafunika kudula ndi kudula mabandeji, lumo lokhazikika limagwiranso ntchito podula mavalidwe. Onetsetsani kuti mwatsuka ndi kuyeretsa lumo mukatha kugwiritsa ntchito. 
• Zovala zamabala. Pali mitundu yosiyanasiyana ya zovala zomwe zilipo zamitundu yosiyanasiyana ya EB ndipo katswiri wanu wa zaumoyo wa EB adzatha kukulangizani za zovala zoyenera kwambiri kwa inu kapena munthu amene mumamusamalira. Nthawi zonse ndikofunika kugwiritsa ntchito zovala zosamata zomwe sizimamatira pakhungu kuti muchepetse kuwonongeka kwina. 
• Mabandeji. Ma bandeji angafunike kuonetsetsa kuti zovalazo zizikhalabe bwino chifukwa zovala zikaterereka zimatha kung’amba khungu losalimba kapena kupangitsa mabala kumamatira ku zovala kapena pa zofunda. Bandeji yosungira imatha kuthandizira kuonetsetsa kuti zovalazo zizikhala bwino.  
• Moisturizers. Kuyabwa kungakhale vuto lalikulu mumitundu yonse ya EB. Pamene mabala akuchira, kapena matenda akamakula, kuyabwa kumatha kukhala kovuta koma kusunga khungu lonyowa kungathandizedi. 
• Antimicrobial oyeretsa. Pali chiopsezo chotenga matenda ndi mitundu yonse ya EB chifukwa cha nthawi zambiri madera akuluakulu a mabala otseguka ndipo motero oyeretsa antimicrobial, moisturisers ndi mankhwala apamutu nthawi zambiri amafunika kuchepetsa ngoziyi. Chithandizo chapamutu ndi mankhwala omwe amagwiritsidwa ntchito pamalo enaake pathupi ndi cholinga chake ndikuchiza minyewa yomwe idagwiritsidwa ntchito popanda zotsatira zazikulu pamasamba ena. 

Pali ogulitsa apadera omwe amatha kutumiza zinthu ngati izi kunyumba kwanu, komanso ma pharmacy ambiri omwe amapereka chithandizo chotumizira mankhwala, choncho funsani ku pharmacy yapafupi. Mmodzi mwa ogulitsa awa ndi Bullen Healthcare omwe ali ndi chidziwitso chachikulu chothandiza EB Community. Nthawi zonse amakhala ndi zinthu zambiri zomwe zimaperekedwa kwa anthu omwe ali ndi EB ndipo apanga gulu lodzipereka kuti lithandize ndi mafunso ndi maoda onse a EB. Kuti mudziwe zambiri zokhudza kupeza zinthu zachipatala ndikupeza mankhwala oyenera, chonde funsani DEBRA EB Community Support Team.

Ngakhale kuti mungathe kuchepetsa chiopsezo cha kuvulala pakhungu, ziphuphu sizingapeweke ndipo nthawi zina zimangobwera zokha, popanda chifukwa chodziwikiratu. Ziphuphu sizimadziletsa zokha ndipo zimatha kukula ngati sizili zokha. Ziphuphu zazikulu = mabala akuluakulu, motero kusamalira ziphuphu ndi gawo lofunika kwambiri pa ntchito yanu yosamalira khungu ndipo kuzibaya mwachangu ndikofunikira. Chonde onani gawo la zothandizira (LUMIKIZANI KU 'RESOURCES' ) kuti mudziwe zambiri zokhudza chisamaliro cha khungu.

Cholinga chake ndi kuteteza kuti chithuza chisakule potulutsa madzi aliwonse, ndikusiya kutsegula kwakukulu kokwanira kuti chithuzacho chisatseke ndi kupanganso, ndikuteteza khungu lamkati. 

M'munsimu muli malangizo okuthandizani kusamalira matuza anu:  

1. Kuthamanga kapena 'kutuluka' matuza okhala ndi singano ya hypodermic kuti madzi a chithuza atha. Izi zimalepheretsa chithuza kuti chisakule ndikupanga malo ochulukirapo akhungu lowonongeka. 
2. Gwiritsani ntchito singano yosabala - kukula kwake ndikofunika kotero lankhulani ndi wothandizira zaumoyo wanu kuti muwonetsetse kuti mukugwiritsa ntchito kukula koyenera. Mutha kufunsa GP kapena EB katswiri wazachipatala kuti akupatseni singano zosabala. Chonde dziwani kuti mudzafunika bokosi lakuthwa ndi ntchito yotolera kuti mutaya singano. Zokhudza kutaya singano.
3. Lance pamunsi kwambiri pa chithuza kuti mphamvu yokoka ithandizire kukhetsa madzi. 
4. Panikizani pang'onopang'ono ndi chopyapyala kapena nsalu yoyera kuti muchepetse madzi - anthu ena amakonda kugwiritsa ntchito syringe yoyera kuchotsa madzimadzi. 
5. Siyani denga la chithuza lolimba kuti muteteze khungu lakuda pansi ndikuchepetsa kuthekera kwa matenda. 
6. Chotsani khungu lakufa kapena zinyalala kuzungulira chithuza, ndikusiya denga la chithuzalo liri bwino - dab osapaka kuti muchepetse kuwonongeka kwa khungu. 
7. Ngati mbali ina ya khungu laiwisi pansi yasiyidwa ngati bala lotseguka, mungafunike kuvala malowo pogwiritsa ntchito mavalidwe osakhala ndi ndodo molangizidwa ndi dokotala wanu. Osagwiritsa ntchito pulasitala wamba wamba chifukwa izi zitha kuwononga kwambiri khungu. Ngati pulasitala womata agwiritsidwa ntchito molakwika, pali zinthu zochotsa zomatira kuphatikiza zopopera ndi zopukuta zomwe zingathandize kuchepetsa kuwonongeka kulikonse pakhungu, izi zitha kupezeka kwa inu pamankhwala kudzera kwa GP wanu kapena kudzera m'ma pharmacies. Zingakhalenso zothandiza kupereka mankhwalawa ku sukulu ya mwana wanu, wothandizira ana, kapena kunyamula kuti mugwiritse ntchito pa nthawi yokumana, mwachitsanzo popereka magazi. 
8. Zingakhale zothandiza kuti chilonda chikhale chonyowa chifukwa kuuma kungapangitse kuyabwa kwambiri. Pali ma creams omwe amathandizira pa izi. 

Gulu lanu lazaumoyo lidzakuthandizani kukulangizani za chisamaliro cha matuza ndipo lingakulimbikitseni kuvala ndi mankhwala omwe ali oyenera khungu lanu ndi mtundu wa EB. 

Matuza amathanso kuwonekera mkati - m'kamwa, m'dera lakumbuyo, ndi zina za mucous (mphuno, pakamwa, m'mimba m'mapapo), zomwe zingakhale zokhumudwitsa. Mapuloteni omwe akusowa omwe amapatsa khungu mphamvu zake amawonekera m'magulu osiyanasiyana m'thupi, kuphatikizapo nembanemba yomwe imaphimba diso ndi minofu yomwe ili m'kamwa ndi kum'mero. Chonde lankhulani ndi gulu lanu lazaumoyo la EB kuti akuthandizireni momwe mungachitire matuza amtunduwu. 

Nthawi zambiri, chithuza chikang'ambika chimachira ndipo sichidzapwetekanso, komabe anthu ena amatha kumva ululu ndi kuyabwa popanda matuza.  

Khungu lomwe lili ndi matuza likhoza kukhala losalimba kwambiri, makamaka potsatira kubweranso kwa matuza pamalo omwewo. 

Nthawi zina bala silichira, kapena limachira koma kenako limawonongekanso, zomwe zingakhale zopweteka, ndipo zingapangitse kuti bala likhale losavuta kutenga matenda. Izi zimadziwika kuti bala losatha. Muzochitika izi, lankhulani ndi katswiri wanu wazaumoyo wa EB kuti mudziwe chifukwa chake bala silikuchira kuti athe kuthandiza, mwachitsanzo, popereka mtundu wina wa kuvala, pogwiritsa ntchito kirimu, kapena kuvala ndi mankhwala oletsa bowa/mabakiteriya, kapena polemba china chake chochotsera matendawa. Palinso zinthu zina zomwe zingakhudze momwe mabala anu amachira kuphatikiza zakudya, kugona komanso kuchepetsa nkhawa. Chonde funsani katswiri wanu wazaumoyo wa EB kapena DEBRA EB Community Support Team kuti akuthandizeni pa thanzi labwino.

Kusintha kwa kavalidwe pafupipafupi komwe kumafunikira kuti muzitha kuyang'anira EB kumatha kukhala kovutitsa komanso kowawa kwambiri, komabe ndi gawo la moyo wonse komanso lofunikira pakusamalira khungu tsiku ndi tsiku, kuwongolera mabala ndi matuza. 

Matuza ayenera kudulidwa mwachangu momwe angathere kuti asabweretse ululu komanso kuwonongeka. 

Nthawi yomwe imatengedwa kuti mutsirize kusintha kwa mavalidwe imatha kusiyana kwambiri, koma kuti muchepetse ululu ndikulangizidwa kuti mumalize kusintha kavalidwe munthawi yochepa kwambiri. Pali mavalidwe osiyanasiyana omwe alipo, ndipo kuonetsetsa kuti mwavala moyenera ndikofunikira, mwachitsanzo, ana obadwa kumene omwe akhudzidwa kwambiri amafunikira kusamalidwa pang'ono ndipo pangafunike kuvala komwe kumatha masiku angapo.  

Zovala zosamata ndizofunikira kuti muchepetse kuwonongeka ndi kupweteka kwina. Ngati zomatira zagwiritsidwa ntchito molakwika, pali mankhwala ochotsa zomatira omwe akupezeka kwa inu pamankhwala kudzera kwa GP wanu kapena kudzera m'ma pharmacies. Zovala zokhala ndi silika nthawi zambiri zimakhala zosavuta kuziyika ndikuchotsa kusiyana ndi zovala zachikhalidwe, zomata. Gulu lanu la akatswiri azachipatala la EB lidzakhala loyenera kulangiza. 

Magulu odziwa zachipatala a EB omwe ali m'malo opangira chithandizo chamankhwala a EB ali ndi ukadaulo wambiri pakuwongolera mabala ndipo azitha kukulangizani za dongosolo loyenera la chithandizo chanu. Chonde funsani katswiri wa zaumoyo wa EB kapena ngati mulibe mwayi wopeza katswiri, gulu la DEBRA EB Community Support Team lingakuthandizeni potumiza. 

Zingakhale zovuta kwambiri kuthana ndi ululu wokhudzana ndi zilonda ndi kuphulika kwa khungu chifukwa cha EB komabe pali njira zosiyanasiyana zochepetsera ululu malingana ndi kuopsa kwa zizindikiro zomwe zimakhudzidwa ndi ululu wokhudzana ndi ululu, izi zimaphatikizapo zonona, ma gels, ndi pakamwa. mankhwala. 

Kwa mitundu ina ya EB, monga EBS, mankhwala ochepetsa ululu angapereke mpumulo koma chonde dziwani kuti ana osapitirira zaka 16 sayenera kupatsidwa aspirin chifukwa pali chiopsezo chochepa chomwe chingayambitse matenda aakulu otchedwa Reye's Syndrome. , izi zikulangizidwa ndi NHS. 

Njira zamphamvu zothanirana ndi ululu zitha kupezekanso kudzera mwa katswiri wanu wazachipatala wa EB wopatsidwa mankhwala. Pezani zambiri apa za mpumulo wa ululu wa EB.

Chonde kambiranani za kugwiritsa ntchito mankhwala opha ululu, ngakhale omwe ali m'sitolo, ndi katswiri wa zaumoyo wa EB. 

Kuchepetsa nthawi yosintha mavalidwe, mwachitsanzo pogwiritsa ntchito ma templates kuti mudule zovala pasadakhale kumachepetsa nthawi yomwe munthu amakumana ndi zovuta komanso kumathandiza kuchepetsa ululu.  

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 zaumoyo zingathandizenso. Magulu a zaumoyo ku malo odziwa bwino a EB ali ndi chidziwitso chochuluka pa kayendetsedwe ka ululu ndipo akhoza kukuthandizani, ngakhale kupweteka kwanu kumakhala kochepa kapena koopsa, ndi njira zothandizira kupweteka kapena ndondomeko ya mavuto. 

Gawo lothandiza la maulalo lili ndi maulalo opita ku mabungwe omwe amapereka chithandizo pa njira zothanirana ndi ululu.

Mukhozanso kupeza malangizo ndi upangiri wokhudza kuthana ndi ululu wosatha patsamba la NHS.

Mabala otseguka kapena khungu laiwisi limatha kutenga kachilombo komwe kumafunikira chithandizo chachangu kuti mupewe kupweteka komanso kuwonongeka. Matenda ambiri amatha kupewedwa posamba m'manja bwino komanso zida zoyera ndizofunikira potupa matuza ndikusintha mavalidwe. 

Zotsatirazi zingasonyeze kukhalapo kwa matenda. 

Ngati mukukumana ndi zizindikiro izi kapena mukudandaula kuti mabala anu akhoza kutenga kachilomboka, muyenera kuwonana ndi dokotala wanu kapena wothandizira zaumoyo wanu. 

• kufiira ndi kutentha kuzungulira dera la khungu. 
• malo omwe khungu likutuluka mafinya kapena kutuluka kwamadzi. 
• kutundika pamwamba pa bala. 
• bala losapola. 
• mzere wofiira kapena mzere wofalikira kutali ndi chithuza, kapena kusonkhanitsa kwa matuza (zingakhale zovuta kuziwona pakhungu lakuda kapena lofiirira). 
• kutentha kwakukulu (kutentha thupi) kwa 38C (100.4F) kapena pamwamba. 
• fungo losazolowereka. 
• kuchuluka ululu. 

Mukangoyamba kuona ngati muli ndi matenda, chonde funsani dokotala wanu kapena wopereka chithandizo chamankhwala kuti akupatseni chithandizo choyenera chomwe chingaphatikizepo mankhwala opha tizilombo toyambitsa matenda, maantibayotiki, ma gelisi, kapena mavalidwe apadera. 

Kuti mupeze chithandizo cha nthawi yayitali komanso kuti mabala apole bwino, mutha kulimbitsa chitetezo chanu chamthupi kudzera mu zakudya ndi zowonjezera zakudya. Lankhulani ndi katswiri wanu wazaumoyo wa EB kuti mukambirane za dongosolo labwino kwambiri la zakudya kwa inu, pitaninso ku gawo lathu la zakudya ndi zakudya kuti mupeze maphikidwe okoma ochokera kwa akatswiri azakudya ndi mamembala athu, odzaza ndi zosakaniza zabwino kuti mupereke mapuloteni ambiri, michere yambiri, komanso mitundu ina ya EB, zakudya zama calorie ambiri, ma pudding, kapena zokhwasula-khwasula.

Kusamalira bwino khungu ndikofunikira kuti muchepetse kuyabwa. Ngakhale kuti chilakolako chofuna kukanda chimakhala chovuta kuchikana, anthu ena amapeza kuti akusisita ndi nsalu yonyowa pang'onopang'ono, kapena kusamba madzi ozizira kumapereka mpumulo. Ngati kuopsa kwa kuyabwa kukufunika, pali mankhwala omwe amapezeka monga mafuta odzola komanso odzola kuti achepetse kuyabwa. 

Kuonetsetsa kuti muli ndi hydrated, kupewa kutenthedwa, komanso kukumbukira zinthu zomwe zimagwirizana ndi khungu lanu, zidzakuthandizaninso. 

Njira zopumula, kupuma ndi kulingalira zingaperekenso mpumulo, nthawi zambiri kuphatikizapo chithandizo chamankhwala ndi makhalidwe ena. Mayankho osiyanasiyana amagwira ntchito kwa anthu osiyanasiyana kotero ndi bwino kukambirana zosowa zanu payekha ndi katswiri wa zaumoyo wa EB. 

Zambiri ndi malangizo amomwe mungachiritsire khungu loyabwa.

Mabala a EB ndi matuza amatha kuchira ndi chipsera. Zilonda ndi mbali ya machiritso achilengedwe a thupi pamene minofu yawonongeka ndipo ikhoza kukhala yofatsa, yowonekera, ndi yanthawi yochepa, kapena yowonjezereka komanso yosatha. Nthawi zambiri, pamene zipsera zimachuluka, malowo amakhala osalimba kwambiri. Kupaka malo omwe ali pachiwopsezo pakhungu kungathandize kuchepetsa ndikuchepetsa kuwonongeka kwina. 

Kupweteka kwakukulu kungayambitse zovuta zomwe zingafunike opaleshoni, katswiri wanu wa zachipatala wa EB adzakambirana nanu njira zothandizira zomwe zilipo. 

Ngati muli ndi nkhawa zokhuza mabala kapena mukufuna thandizo, magulu azachipatala a EB ali ndi zokumana nazo zambiri mderali ndipo atha kukambirana zakukhosi kwanu ndi chithandizo chilichonse chomwe mungafune. 

Kupsinjika maganizo ndi kusagona mokwanira kungakhudze kuchira kwa mabala komanso kuthekera kothana ndi ululu. Komabe, zizindikirozi zitha kuwongoleredwa kudzera mu njira zothanirana ndi kupsinjika maganizo, zakudya zowonjezera, mankhwala, kusinkhasinkha, kusamala, ndi njira zina zopezera thanzi. Gulu lanu lazaumoyo la EB lidzatha kukuthandizani kuti mupeze chithandizo choyenera kwa inu, mutha kupezanso zinthu zina apa kapena pitani kuno kuti mudziwe zambiri.

Kukhala ndi EB kungakhale kovuta, koma DEBRA EB Community Support Team ili pano kwa aliyense amene akukhala ndi kapena kukhudzidwa mwachindunji ndi mtundu uliwonse wa EB wobadwa nawo ndi wopezedwa. Gululo likhoza kupereka chidziwitso chamalingaliro, chothandiza, komanso chandalama komanso chithandizo pa gawo lililonse la moyo.

Kulowa nawo DEBRA UK monga membala ndi kwaulere, ndipo umembala umakupatsani mwayi wopeza mautumiki onse operekedwa ndi DEBRA EB Community Support Team, kuphatikiza maubwino ena abwino kuphatikiza zochitika zapadera, komwe mungalumikizane ndi mamembala a gulu la EB pamasom'pamaso kapena pa intaneti, tchuthi chotsika mtengo, upangiri, ndi chidziwitso cha akatswiri azachuma, chithandizo, ndi ndalama zothandizira.

Umembala umakupatsaninso mawu komanso mwayi wopanga zomwe timachita; ntchito zofufuza zomwe timayikamo, ndi ntchito zomwe timapereka kwa gulu lonse la EB. Komanso kungolowa nawo ngati membala mupanga kusintha chifukwa tikamakhala ndi mamembala ambiri, timakhala ndi data yambiri, zomwe ndizofunikira kwambiri pothandizira pulogalamu ya kafukufuku ya EB, ndipo mamembala ambiri amatipatsa mawu okweza kuti tithandizire kukopa boma, NHS, ndi mabungwe ena kuti athandizidwe kuti apititse patsogolo ntchito zopindulitsa gulu lonse la EB.