Wannan shafin yanar gizon yana amfani da kukis domin mu iya ba ku damar kwarewa mafi kyau. Ana adana bayanin kuki a cikin burauzarka kuma yana aiki da ayyuka kamar gane da ku idan kun dawo zuwa shafin yanar gizon mu da kuma taimaka wa tawagar mu fahimci wane ɓangaren shafin yanar gizon da kuka samu mafi ban sha'awa da amfani.
Bayanin gaggawa ga marasa lafiya na EB
Wannan shafin yana ba da mahimman bayanan tuntuɓar da za ku buƙaci idan kuna cikin epidermolysis bullosa (EB), ko gaggawar likita ba ta EB ba, da mahimman bayanan EB waɗanda ƙwararrun ƙwararrun kiwon lafiya ba EB ba dole ne su sani lokacin jinyar ku.
EB gaggawa da lambobin gaggawa da tallafi
A cikin gaggawa na likita (idan kuna da mummunar rashin lafiya, kuka ji rauni, ko akwai haɗari ga rayuwar ku) koyaushe ku kira 999 ko ku je sashin Hatsari & Gaggawa (A&E) mafi kusa. Don samun cikakkun bayanai Sashen A&E mafi kusa da ku da fatan za a ziyarci gidan yanar gizon NHS.
Kiwon lafiya na gaggawa
Don kiwon lafiya na gaggawa - EB ko wanda ba na EB ba - buga lamba 111 ko tuntuɓi GP na gida. Idan baku da bayanan tuntuɓar su, da fatan za a ziyarci Yanar gizon NHS.
Katunan Bayanin likitanci
Saboda EB yanayi ne da ba kasafai ba, babu tabbacin cewa likitan ko GP da ke jinyar ku za su ji labarinsa ko fahimtarsa. Suna iya buƙatar ƙarin ƙwararrun bayanai da shawarwari na EB, kuma suna iya son tuntuɓar likitan fata na kira ko memba na ƙwararrun ƙungiyar kula da lafiyar EB.
Don tabbatar da cewa suna da bayanan da suka dace da bayanan tuntuɓar mu muna ba da shawarar cewa koyaushe ku ambaci cewa kuna da EB yayin magana da ƙwararrun kiwon lafiya, koda kuwa dalilin da kuke ganinsu baya da alaƙa kai tsaye da EB ɗin ku. Wannan zai taimaka wajen tabbatar da cewa su da ƙungiyoyin su sun ba da izinin da suka dace, misali, guje wa filasta mai ɗaki, guje wa zamewa yayin canja wurin ku, yin amfani da taka tsantsan yayin cire kowane sutura da sauransu.
Muna kuma ba da shawarar cewa koyaushe ku nuna katin 'Ina da EB'.
Idan ba ku da ɗaya ko kuna son sigar tag ɗin kaya, kuna iya buƙatar katin ta tuntuɓar Ƙungiyar Memba ta DEBRA UK.
A madadin, zaku iya zazzage katin da ya dace a ƙasa kuma ko dai buga shi a kashe ko ajiye shi azaman hoto akan wayarka. Da fatan za a zaɓi wanda ke da alaƙa da cibiyar kula da lafiya ta EB da kuke ƙarƙashinta. Idan kuna ƙarƙashin kulawar ƙungiyar kula da lafiya ta EB ko wasu sabis na kiwon lafiya na gida, to zaku iya cike cikakkun bayanai masu dacewa akan sigar mara kyau.
Zazzage katin bayanin lafiyar ku
Buga ko ajiye katin ku akan wayarka don gaggawa
“Na gode da aiko min da katin 'Ina da EB'. Lokacin da na nuna shi a wani alƙawari na likita kwanan nan, ya ɗauki EB na da mahimmanci. A duk rayuwata wannan shi ne karo na farko da hakan ya faru.”
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Da fatan za a tuna cewa DEBRA EB Community Support Team yana samuwa don tallafin da ba na likita ba kuma don taimaka maka alamar zuwa ayyukan kiwon lafiya masu dacewa Litinin-Jumma'a 9 na safe-5pm.
EB kwararrun sabis na kiwon lafiya
Don ƙarin bayani da cikakkun bayanan tuntuɓar cibiyoyin kiwon lafiya na NHS EB guda huɗu da sabis na EB na Scotland, da fatan za a ziyarci shafinmu akan. EB kwararrun kiwon lafiya.
Idan kuna son ƙarin bayani, ko goyan baya tare da miƙawa zuwa cibiyar kiwon lafiya ta EB, tuntuɓi mu Taimakon Al'umma na EB.
Gudanar da haƙuri na EB don ƙwararrun kiwon lafiya
Mutanen da ke zaune tare da kowane nau'in EB suna da fata mai rauni sosai wacce za ta iya fashewa ko yage tare da ƙwanƙwasa kaɗan ko gogayya. Wasu majinyatan EB na iya samun kumburi mai zafi a hannayensu da ƙafafu kawai, yayin da wasu kuma na iya samun kumbura a kowane sashe na jikinsu ciki har da idanunsu, da cikin bakinsu da makogwaro.
Yana da mahimmanci ku tambayi majiyyata, danginsu, ko masu kula da su don neman shawara game da yanayin su kasancewar su ne ƙwararru. Bayanan kula da marasa lafiyar EB da ke ƙasa baya maye gurbin shawara daga ƙwararren ƙwararren kiwon lafiya.
MUHIMMI: Da fatan za a tuntuɓi ƙungiyar masu ba da lafiya ta EB na majiyyaci kafin yin duk wata hanya ta cin zarafi.
| Guji / taka tsantsan | Madadin/nasihu |
| Matsi, juzu'i, da ƙarfi | Yi amfani da dabaru kamar 'ɗagawa da wuri'. |
| Yada blisters | Fashe blisters tare da bakararre allura, bar hular blister a wuri kuma a rufe da rigar da ba ta dace ba. |
| Tufafin m, kaset & ECG lantarki | Idan an buƙata ta likitanci, cire riguna tare da abin cire kayan shafa na likitanci na siliki ko 50% na ruwa paraffin, 50% farar maganin shafawa mai laushi. Cire a hankali tare da dabarar birgima, ba ta ɗaga sutura ba. |
| Yawon shakatawa | Matse gaɓoɓin hannu da ƙarfi, da nisantar ƙarfi; idan ya cancanta, yi amfani da padding. |
| hawan jini cuffs | Sanya a kan tufafi ko bandeji. |
| Thermometers | Yi amfani da ma'aunin zafi da sanyio. |
| Safofin hannu na tiyata | Lubrite da yatsa idan ya cancanta. |
| Cire tufafi | Yi amfani da taka tsantsan; idan makale, sai a jika da ruwan dumi. |
| Mattress | Yi amfani da katifa mai kawar da matsi mara canzawa. |
| Tsotsar iska | Idan ya cancanta, yi amfani da catheter mai laushi mai laushi. Idan ana buƙatar tsotson Yankeur a cikin gaggawa, yi amfani da man shafawa zuwa tip kuma babu tsotsawa yayin sakawa. Sanya catheter tsotsa a kan hakori don kauce wa cire murfin baki. |
| Bude idanu | Kada a tilasta budewa; yi amfani da mai mai, idan ya cancanta. |
| Hauwa | Bincika idan majiyyaci yana shan abinci ko magani da baki. Magungunan ruwa da abinci mai laushi ko abinci mai tsafta na iya dacewa. Abin sha mai sanyi ko dumi zai fi dacewa da abin sha mai zafi. |
Kamar yadda buɗaɗɗen raunuka ko ɗanyen fata na iya kamuwa da cuta sannan kuma suna buƙatar magani na gaggawa don hana ƙarin ciwo da lalacewa, yana da mahimmanci a yi taka tsantsan wajen hana kamuwa da cuta ga mutanen da ke da EB.
Don ƙarin jagora kan cututtuka, kamar alamun kamuwa da cuta da abin da za ku yi idan kun ga alamun ɗaya, da fatan za a ziyarci mu 'Game da EB' shafi.
Don ƙarin bayani game da EB fata da kuma kula da rauni, da fatan za a sauke da Jagororin Ayyuka na Clinical na EB.
EB Clinical Practice Guidelines (CPGs) don ƙwararrun kiwon lafiya
CPGs saitin shawarwari ne don ingantacciyar kulawar asibiti bisa shaidar da aka samu daga kimiyyar likita da kuma ƙwararrun ra'ayin likita. An tsara su don taimakawa masu sana'a na kiwon lafiya su fahimci yadda ake kula da marasa lafiya tare da EB.
DEBRA International, ƙungiyar tsakiya don cibiyar sadarwa ta duniya sama da ƙungiyoyin tallafi na DEBRA/EB na ƙasa 50, gami da DEBRA UK, sun samar da jagorori da yawa, waɗanda yawancinsu DEBRA UK ta ba da tallafi (wanda alama alama ce ta alama *). Don gano yadda aka ƙirƙiri waɗannan CPGs, da fatan za a sauke Bayanan Bayani na EB CPG.
CPGs masu kaifin haƙuri
An halicci EB CPGs musamman don masu sana'a na kiwon lafiya da ke kula da marasa lafiya na EB; duk da haka, akwai kuma ɗakin karatu na nau'ikan daidaitawar haƙuri don mutanen da ke zaune tare da EB, danginsu, da masu kulawa. Ana iya samun waɗannan a kan DEBRA International gidan yanar gizon.
Idan kai kwararre ne na kiwon lafiya tare da ƙwarewar sarrafa majinyatan EB kuma kuna son shiga tare da haɓaka EB CPGs na gaba, don Allah tuntube mu.