
debra

debra (jise pahale debra key roop mein jaanaa jaataa thaa) ack antarrashtriya chikitsa anusandhaan daan kaa naam haye joe epidermolysis bullosa key upchaar key liye samarpit haye, jisamen sanyukt raajya aur sanyukt raajya america sahit 40 seey adhik deshon mein rashtriya samooh hain.
itihas.
"debra" britten mein sangathan key mool sansthaapak philis hilton kii betty kaa pahala naam haye, joe iss sthiti key saath anya chhote bachchon key maataa-pitaa, sanrakshkon aur dekhbhal karane vaalon key liye ack samarthan samooh key roop mein shuru huaa thaa.
halanki dystrophic epidermolysis bullosa anusandhaan sangh key backronim kaa upayog ateet mein debra yuu. key. dwara kiya gayaa haye, sangathan kewal dystrophic naheen, balki ee. bee. key "sabhi" roopon key liye jaankaari, anusandhaan vitt poshan aur samarthan pradaan kartaa haye, joe sthiti key teen mukhya upa-prakaron mein seey ack haye; anya ee. bee. simplexes aur junctional ee. bee. hain.
debra us sangathan ney 1980 mein apane gathan key baad seey america key dystrophic eb research association key liye uparokt sankshipt naam debra kaa upayog karna jaari rakhaa haye.
kaam karate hain.
epidermolysis bulosa ack aanuvanshik sthiti haye joe apane sabse gambhir roopon mein shareer key sabhi astaron, twacha, munh aur annapranali key astaron aur yahaan taka kii aankho koo bhee prabhaavit karati haye. apane sabse gambhir roopon mein lining fafole yaa gharshan key sabse halke key tahat maans seey door cheerate hain. udaaharan key liye, bistar parr ludhakane seey twacha kaana key peechhe seey futt sakati haye, aur peedit vyakti harr subah 30 fafole key saath jaag sakata haye.
inn fafole key vikas koo rokane key liye unhein lancing aur draining karane parr koee upchaar naheen haye. sabse gambhir roop key peedit twacha cancer seey samay seey pahale marr jaate hain (unaki jeevan pratyasha aamtaur parr 30-40 varshon taka cumm hoe jaati haye); kuchh mein, mrityu shaishavavastha mein hoti haye. pratyek dinn peediton koo khule ghaavon key kaaran drav haani aur sankraman key khilaf ladaai kaa saamana karna padata haye. phode shareer key ander key astaron koo bhee prabhaavit curr sakate hain, jaise kii munh aur galaa. sabse gambhir roopon key peediton koo apane munh mein kaudepan key kaaran khaane mein kathinaaee hoti haye aur aksar unhein ack feeding tube fitt karni padati haye.
ee. bee. key kaee alag-alag roop hainh cumm seey cumm gambhir roop mein, fafole haathon aur pairon taka hii seemit hotey hain. adhik gambhir mamalon mein, puuraa shareer prabhaavit hotaa haye aur ghaav bahut dheere-dheere thheek hoe jaate hain, jisase nishan, shaaririk vikriti aur mahatvapurna akshamta paida hoti haye.
britten mein.
debra yuu. key. rashtriya daan haye joe ee. bee. seey prabhaavit vyaktiyon aur parivaaron kaa samarthan kartaa haye. britten mein cumm seey cumm 5,000 loga iss vinashkari sthiti key saath reh rahey hain aur duniya bhar mein 500,000 loga hain.
debra yuu. key. kii sthaapana 1978 mein hui thee aur yeh aine. aich. aiss. key saath saajhedaari mein ack unnat visheshagya ee. bee. nursing seva pradaan kartaa haye, taaki ee. bee. aur samudayik sahaayata karmchaariyon key saath rahane vaale bachchon aur vayaskon koo parivaaron key saath seedhe kaam karane key liye ishtatam swaasthya seva pradaan kii jaa sakey. daan bhee prabhaavi upchaar khojane key uddeshya seey sthiti mein shodh kartaa haye aur antatah, eb key liye ack ilaaj. debra yuke kii desh bhar mein 100 seey adhik charity dukaanen hain. epidermolysis bulosa seey prabhaavit parivaaron aur chikitsa anusandhaan key liye dukaanon seey daan aur dhana sahaayata sevaaon seey praapt aaya.
sanyukt raajya america mein.
america key debra kii sthaapana 1980 mein arlen pacer aur unake bete erich lopage dwara kii gaee thee, joe epidermolysis bulosa key saath paida hue they. yeh ekmatra yuu haye.aiss. gair-laabhkaari sangathan joe ee. bee. samudaay koo sabhi samaveshi samarthan pradaan kartaa haye, ack ilaaj key liye vitt poshan anusandhaan key madhyam seey aur ee. bee. vaale logon key liye muft karyakram aur sevaaen pradaan karke. america key debra kaa mission ee. bee. key liye ack ilaaj aur upchaar khojane key liye anusandhaan koo vitt poshit karate hue, muft karyakramon aur sevaaon key madhyam seey ee. bee., unake parivaaron aur dekhbhal karane vaalon key saath sanyukt raajya mein rahane vaale sabhi logon key liye jeevan kii gunavatta mein sudhaar karna haye.
2015 mein, america kii debra ney swaasthya aur kalyan vigyaapan agency haivas dwara nirmit inn vigyapanon key saath-saath tv aur web vigyapanon kii ack shrinkhala shuru kii, joe duniya bhar mein durlakshit karane vaali durlabh bimari key baare mein jagrukta failaane key uddeshya seey hain.
anya desh.
rashtriya samoohon kii ack soochi debra international mein paaee jaa sakati haye.