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.
Maida magunguna don EB
Magance miyagun ƙwayoyi shine dabarar amfani da magungunan da ke akwai don sabon magani ko yanayin likita wanda ba a nuna shi ba a da.
Wannan yana haifar da dama mai ban sha'awa ga mutanen da ke da EB, da sauran yanayi maras tsada kuma, inda tsadar haɓaka sabon magani (har zuwa £ 1b kowace magani) da lokacin kasuwa (shekaru 10-20) galibi yana sa ta kasuwanci. maras kyau ga kamfanonin harhada magunguna.
Mayar da magunguna a kwatanta yawanci farashin har zuwa £ 500k kowace magani kuma yana iya ɗaukar ƙasa da shekaru 2.
Dubi ginshiƙi da ke ƙasa wanda ke kwatanta tsarin lokaci don haɓaka sabon-sabon magani tare da tsarin lokaci mai maimaita magani.
Don EB akwai magunguna da aka riga aka samu a cikin NHS waɗanda suka sami nasarar magance wasu yanayin fata masu kumburi, gami da psoriasis da atopic dermatitis (ƙananan eczema), wanda zai iya inganta haɓakar alamun EB kamar blistering da ingancin rayuwa gabaɗaya. Don tabbatar da tasirin waɗannan magungunan don maganin EB ko da yake yana buƙatar gwaji ta hanyar gwaji na asibiti.
Dabarun binciken mu na EB suna ba da fifikon saka hannun jari a cikin sake fasalin ƙwayoyi don amintaccen jiyya masu canza rayuwa ga kowane nau'in EB.
Ta hanyar fahimtar yadda jiyya ke aiki da kuma yadda ake haifar da alamar EB, masu binciken EB na iya gano jiyya tare da yuwuwar sake dawowa.
Kwararrun likitocin na iya ba wa wasu ƴan marasa lafiyar EB damar gwada 'lakabin-lakabin' magani. Wannan yana nufin yana da lasisi don kula da wani yanayi banda EB. Suna nazarin sakamakon a hankali kuma suna buga sakamakon su azaman nazarin yanayin. Koyaya, don mayar da magani, a gwajin gwaji shigar da ƙarin marasa lafiya za su buƙaci gudanar da su don tabbatar da cewa kyakkyawan sakamako da aka gani a cikin binciken farko ba kawai saboda kwatsam ba.
Mai yiwuwa likitan likitan ku na EB ya tambaye ku idan kuna son shiga cikin gwajin asibiti na EB, a madadin haka kuna iya tambayar likitan ku na EB kai tsaye don ƙarin bayani kan gwajin asibiti na EB wanda ƙila ku cancanci. Hakanan muna raba damar gwajin asibiti na EB tare da membobinmu kuma ta gidan yanar gizon DEBRA UK.
Babu wani wajibci shiga cikin gwajin asibiti na EB kuma idan kun zaɓi shiga za ku iya janyewa daga gare ta a kowane lokaci ba tare da bayar da dalili ba.
Lokacin da isassun mutane suka shiga cikin gwaji, masu binciken za su bincika sakamakon don ganin ko za su iya tabbatar da cewa maganin zai sami tasiri mai kyau akan alamun.
DEBRA UK ɗaya ce daga cikin ƙungiyoyi da yawa waɗanda ke ba da kuɗin gwajin asibiti na EB. Ba mu gudanar da gwaje-gwajen da kanmu kuma muna amfani da shawarwari daga masana bincike da ra'ayoyin membobinmu don taimakawa wajen yanke shawarar irin gwajin da muka yi imanin za su iya ba da shaida mai ƙarfi ga amincewar lasisi. kuma ta haka wadanne ne za mu ba da shawarar samar da kudade.
An tabbatar da tsarin sake dawo da kwayoyi don ceton rayuka.
Wataƙila ka yi amfani da magungunan da aka sake amfani da su da kanka. Lokacin da cutar ta COVID-19 ta fara, an yi gaggawar sake dawo da magungunan da za su iya taimakawa. Likitoci sun yi amfani da iliminsu na kwayar cutar wajen zabar magunguna, kuma an fara gwajin asibiti don ganin ko hasashen da suka yi na ilimi daidai ne.
Aspirin misali ne na maganin da aka saba da shi wanda aka yi nasarar sakewa. Daga farkon amfani da shi akan zafi, zazzabi, da kumburi, yanzu ana amfani dashi a cikin ƙananan allurai don rage damar bugun zuciya da bugun jini.
A wasu lokuta, illolin magani yana ba da damar sake dawowa, alal misali, Viagra an fara haɓaka shi don magance angina, amma sakamakon da aka lura da shi ya haifar da sake dawowa don magance tabarbarewa. Har ila yau, an yi nasarar sake yin magunguna daban-daban don magance ciwon daji na nono da suka hada da maganin rigakafi, anti-virus, maganin cututtuka na autoimmune, magungunan wasu cututtuka da magungunan da aka yi amfani da su a asali don taimakawa wajen rashin haihuwa.
Sauran mutanen da ke zaune tare yanayi mai wuya ciki har da tuberous sclerosis, alkaptonuria, da autoimmune lymphoproliferative syndrome sun kuma amfana daga binciken sake amfani da miyagun ƙwayoyi da gwaje-gwaje na asibiti wanda ya haifar da amincewa da magungunan da ake ciki don magance waɗannan yanayi.
Magunguna da yawa suna da ƙarin tasiri waɗanda ke nufin ana iya amfani da su don magance alamun ban da waɗanda aka ba su lasisin asali. Inda sakamako ɗaya shine don rage kumburin fata, kumburi, itching, ko tabo, waɗannan kwayoyi na iya zama masu dacewa musamman ga mutanen da ke da EB.
Farkon maganin EB na sake fasalin gwajin asibiti wanda muka ba da kuɗaɗen gwajin asibiti Magungunan anti-inflammatory (apremilast) wanda ke da lasisi don kula da marasa lafiya da psoriasis.
Sakamakon ƙarfafawa da aka buga bayan ƙaramin gwaji na farko, ya nuna cewa wannan magani ya bayyana don rage blistering a cikin marasa lafiya waɗanda ke da nau'i mai tsanani. epidermolysis bullosa simplex (EBS). Dangane da waɗannan sakamako masu ban sha'awa na farko yanzu muna ba da tallafin gwaji mafi girma don auna ba kawai blister ba har ma ko wannan maganin zai iya inganta yanayin rayuwa ta hanyar rage zafi da ƙaiƙayi kuma.
Yin amfani da jiyya da ake samu ta hanyar NHS don samun nasarar magance wasu yanayin fata mai kumburi yana nufin za mu iya samun jiyya don EB da wuri.
Don gano wasu damar gwaji na asibiti na EB, da fatan za a ziyarci yadda ake shiga cikin shafin gwaji na asibiti.