Ganda rako riri kusviba here uye rinobuda nekubatwa zvishoma? Ingava Epidermolysis Bullosa (EB) here?

Dzimwe nguva ganda redu rinonyanya kunzwa, handiti? Kunyangwe kana chimwe chinhu chidiki chikarova, kana chipfeko chikabvaruka, vamwe vanhu vanowana maronda uye kukuvara kweganda zviri nyore. Kunyanya sezvo ganda revacheche vadiki rakapfava, zvinovhundutsa zvikuru kana ukaona zvinhu zvakadaro. Saka nhasi tichataura nezvechirwere chinoitika paganda rakadaro, icho chisingawanzoitiki asi chakakosha kuziva. Icho chinonzi epidermolysis bullosa, kana kuti EB muchidimbu.

Chii chaizvo chinonzi epidermolysis bullosa (EB)?

Zvichitaurwa zviri nyore, epidermolysis bullosa (EB) chirwere chinoberekwa nhaka . Chinoita kuti ganda rako rive risina kusimba uye rive nemapundu uye ribviswe zviri nyore. Dzimwe nguva, kunyangwe ukakwiza ganda rako nehembe kana kurohwa kune imwe nzvimbo, unogona kuita mapundu nemaronda. Kune vamwe vanhu, zvinogona kunge zviri zvinyoro uye zvinongokonzera mapundu anorwadza pamaoko, magokora, mabvi, netsoka. Zvisinei, muzviitiko zvakakomba, mapundu aya nemaronda anogona kuonekwa chero kupi zvako pamuviri. Zviratidzo zveEB zvinogona kubva pazvishoma kusvika zvakanyanya .

Yeukai, dzimwe nguva maronda aya anogona kubuda mumuromo, pahuro (mudumbu), mumaziso, nedzimwe nhengo dzemuviri. Kana maronda aya apora, anogona kusiya mavanga anorwadza. Muzviitiko zvakakomba, maronda aya anogona kukuvadza nhengo dzemuviri, izvo zvinogona kuisa hupenyu panjodzi.

Ndeapi marudzi makuru eEB?

Kune mhando ina huru dzeEB, idzo dzinoonekwa neganda rakakanganiswa.

1. EB Simplex (EBS): Iyi ndiyo mhando yeEB inonyanya kuwanikwa . Inogona kubva padiki, isingarwadzi zvakanyanya, kusvika pakurwadziwa zvakanyanya, uye yakanyanya, mune vamwe vanhu. Maronda anoumbwa pamusoro peganda, epidermis . Maronda haawanzoitiki mushure mekunge maronda aya apora.

2. Junctional EB (JEB): MuJEB, maronda anoumba mumuromo nemunzira yekufema. Izvi hazviwanzoitiki , uye zvinogona kubva pane zvishoma (zvisingafadzi zvishoma, zvinorwadza zvishoma) kusvika zvakanyanya.

3. Dystrophic EB (DEB): MuDEB, maronda anoumbwa pakati peganda, dermis . Izvi zvinogonawo kusiyana kubva padiki kusvika pakanyanya.

4. Kindler Syndrome: MuKindler Syndrome, maronda anogona kuumbwa paganda rese. Izvi hazviwanzoitiki .

Vanachiremba vanosiyanisa EBS, JEB, uye DEB zvichienderana nezvikamu zveganda rako zvinokanganiswa. MuKindler syndrome, maronda anogona kuoneka muzvikamu zvakasiyana zveganda rako.

Ndiani anonyanya kubatwa nechirwere ichi? Chinowanzoitika sei?

EB inogona kukanganisa chero ani zvake. Vanhu verudzi rupi zvarwo, dzinza, kana kuti murume kana mukadzi vanogona kuva neEB. Zvisinei,Kana mumwe wevabereki vako aine chirwere ichi, une mukana mukuru wekuwana EB.

Kunyangwe zvakajairika, zvichienderana nehuwandu hweUnited States, munhu mumwe chete pavanhu zviuru makumi mashanu ndiye ane chirwere cheEB. Izvi zvinoreva kuti chirwere ichi hachiwanzoitiki.

Ndezvipi zvinogona kukonzera EB mumuviri?

Muzviitiko zvakakomba zveEB, maziso anogona kusviba uye kutokonzera kurasikirwa nekuona . Dzimwe nguva, mavanga akanyanya uye kuremara kweganda netsandanyama zvinogona kuitika, zvichiita kuti zvisakwanise kufambisa minwe, maoko, tsoka, uye majoini zvakanaka. Vamwe vanhu vane EB vane njodzi yakakura yekubatwa nekenza yeganda inonzi squamous cell carcinoma .

Muzviitiko zvakakomba, rufu runogona kuitika panguva yehucheche . Izvi zvinokonzerwa nemamiriro ezvinhu akadai sehutachiona hwakakomba (semuenzaniso , sepsis ), kutadza kufema nekuda kwekuvharika kwemhepo inofambisa mweya, kupera mvura mumuviri, uye kushaya chikafu chinovaka muviri.

Ko EB inogona kuuraya here?

Izvi zvinoenderana nerudzi rweEB yaunayo. Mhando dzeEB dzisina kunyanya kuoma hadziurayi. Zvisinei, tarisiro yekurarama kwevanhu vane mhando dzeEB dzakakomba inogona kubva paucheche kusvika pamakore angangoita makumi matatu. Saka ichi chirwere chinoda kutariswa zvakanyanya.

Ndezvipi zviratidzo zveEB?

Zviratidzo zveEB zvinosiyana zvichienderana nerudzi rwacho. Zviratidzo izvi zvinowanzoonekwa paunenge uri mucheche kana mwana mudiki . Zvimwe zviratidzo zvinowanzoonekwa pakati pemarudzi akasiyana. Heano mamwe ezviratidzo zvikuru zveEB:

• Maronda paganda (maoko, tsoka, magokora, mabvi) kana mukati memuviri.
• Kukora kweganda pazvanza netsoka, zvichiita kuti zvinzwe sekunge zvakakora.
• Kuderera kwemasero matsvuku eropa (Anemia).
• Zvigunwe zvinonamirana (zvigunwe kana zvigunwe zvakasanganiswa).
• Nzara dzeminwe nedzetsoka dzakaremara uye/kana dzakakora.
• Kuonekwa kwemapundu madiki machena akaita semapundu (milia) paganda.
• Kuoma kumedza chikafu (dysphagia).
• Kusakura zvakanaka kunotarisirwa mumwana.
• Mazino asingakure sezvaitarisirwa ( hypoplasia ).

Chii chinokonzera EB?

Chikonzero chikuru cheEB imutation kana chikanganiso mune rimwe remajini gumi nemasere . Vanhu vane chirwere ichi vane jini risipo kana rakakuvara rinobatsira kugadzira puroteni inonzi collagen . Sezvamunoziva, collagen ndiyo inopa simba uye chimiro kune matishu anobatanidza senge ganda redu. Saka, nekuda kwekanganiso iyi yemajini, zvidimbu zviviri zveganda, epidermis nedermis, hazvibatane zvakanaka. Nekuda kweizvozvo, ganda rinova risina kusimba, rinoita maronda nyore nyore, uye rinokuvara.

EB chirwere chinowanzo gara nhaka , zvichireva kuti kana mumwe wevabereki vanacho, vana vanogona kuchigara nhaka.

Zvisinei, kashoma, EB inogonawo kuitika sechirwere che autoimmune chinowanikwa .

Chinhu chinonyanya kukosha ndechekuti EB haisi chirwere chinotapuriranwa. Kazhinji chinogara nhaka. Saka, kana ukasangana nemunhu ane EB, hauzoibatwe nayo.

Ungaziva sei kuti une EB? (Kuongororwa)

Vanachiremba vanogona kuongorora EB nekuita biopsy yeganda , iyo inosanganisira chiremba kutora sampuli diki yeganda oriongorora pasi pemaikorosikopu.

Pamusoro pezvo, kuongororwa kwemajini kunogona kuona jini risina kunaka uye kusimbisa rudzi rweEB. Vabereki vari kuronga kuva nemwana vanogonawo kuongororwa majini vasati vaberekwa kuti vaone kana vari panjodzi yekuita mwana ane EB.

Ndezvipi zvirongwa zvekurapa EB?

Zvinosuwisa kuti pari zvino hapana mushonga weEB . Zvisinei, kurapwa kunogona kubatsira:

• Inobatsira kudzivirira maronda.
• Kuchengetedza maronda neganda zvakanaka kunodzivirira matambudziko.
• Inorapa matambudziko ekudya anokonzerwa nemaronda mumuromo kana pahuro.
• Kudzora marwadzo.

Kuti ganda ridzivise kukuvara uye kuumbwa kwemapundu nemaronda nekuda kwekukweshana, vanachiremba vanokurudzira zvinotevera:

• Pfeka mbatya dzakapfava, dzisingapindiki dzakagadzirwa neshinda dzechisikigo. Kupfeka mbatya dziri mukati nekunze kunogona kubatsira kuderedza misono inokwesha paganda rako.
• Dzivisa kupisa zvakanyanya; chengeta makamuri ari patembiricha yakasununguka uye yakafanana.
• Dzivisa kubuda muzuva, kana kupfeka mafuta ekudzivirira zuva uchishandisa magirazi ezuva nengowani.
• Shandisa mhando dzakasiyana dzemabhandeji kudzivirira ganda - shandisa mabhandeji asinganamati uye tepi, gauze rakamonerwa, nezvimwewo.

Kuti ubvise mavanga, chiremba wako anogona kukukurudzira kuti utore matanho akadai se:

• Isa mafuta ekuzora pamaronda zuva nezuva.
• Shandisa mabhandeji ane mushonga kubatsira maronda kupora uye kudzivirira hutachiona.
• Tora mushonga wekudzora marwadzo.

Kuti ukwanise kurapa hutachiona, chiremba wako anogona kukurudzira zvinotevera:

• Inwa mishonga inorwisa mabhakitiriya kana kuisa kirimu inorwisa mabhakitiriya.
• Shandisa machira ekuvhara maronda chaiwo pamaronda asingapore.

Kuti udzivise matambudziko ekudya uye kuoma kudya nekuda kwemapundu emuromo kana pahuro, chiremba wako anogona kukurudzira zvinotevera:

• Pakudyisa mwana wako, shandisa bhodhoro remwana rine nipple yakakosha .
• Dyisa mwana nechinhu chinodonhedza maziso kana sirinji.
• Wedzera mvura shoma muchikafu chakakuyiwa kuti chisanyanya kunyorova uye chipe chikafu. Izvi zvichaita kuti zvive nyore kumedza.
• Idya zvekudya zvakapfava zvakaita sesobho, chikafu chakapwanywa, pudding, uye applesauce .
• Chikafu chinopihwa pakupisa kunodziya (kwete kupisa zvakanyanya).
• Enda kune nyanzvi yezvekudya kuti akuudze zvaunoda pakudya.

Muzviitiko zvakakomba zveEB, ungangodawo kuvhiyiwa . Kana gumbo (chubhu inotakura chikafu kubva mumuromo kuenda mudumbu) rakavharwa nemaronda nemavanga, kuvhiyiwa kunogona kuitwa kuti rikure. Vamwe vanhu vanogona kunzvenga gumbo rose voisa chubhu yekudyisa kuti chikafu chipinde mudumbu zvakananga. Kuvhiyiwa kunogonawo kuitwa kuti minwe iparadzaniswe pamwe chete nekuda kwemaronda.

Munhu ane EB anozvitarisira sei?

Kana uine EB, mazano aya achakubatsira kuzvitarisira:

• Rara pamachira nemapillow cases zvakagadzirwa neshinda dzakapfava, dzechisikigo, dzakadai sesiriki kana satin.
• Pfeka shangu dzakanaka dzisingakudzvinyiriri muviri wako.
• Dzivisa kumira kana kufamba kwenguva yakareba.
• Dzivisa kukwenya kana kuruma ganda. Isa mishonga yekuderedza kuvaviwa.
• Ziva zvakakupoteredza uye dzivisa kubata kana kukwenya ganda rako netsaona.
• Gara uchinyorovesa ganda rako kuti uderedze kukweshana.
• Kana maronda akabuda, kurumidza kuaputira netsono yakacheneswa kana chigero chakachena.
• Shandisa bhandeji risinganamatire. Neimwe nzira, isa petroleum jelly (Vaseline™) kana mafuta anozora ganda (akadai seAquaphor™) pabhandeji kuti risanamatira paganda.

Nzira yekuchengeta mwana ane EB? Mamwe mazano kuvabereki

Kana mwana wako aine EB, zvaanoda zvakasiyana nezvevamwe. Vangasakwanisa kutaura nezvekusagadzikana kwake. Aya mazano anogona kubatsira mwana wako kuti agare akasununguka sezvinobvira:

• Geza maoko ako zvakanaka usati wabata ganda remwana wako.
• Dzivisa kushandisa magirovhosi elatex, sezvo anogona kuwedzera kukweshana.
• Pakugeza mwana wako, pane kuisa muviri wese mudhishi rizere nemvura panguva imwe chete, geza chikamu chimwe nechimwe cheganda rimwe nerimwe.
• Pane kuisa mwana wako mucheche mumanapukeni, funga nezvekumuisa mapedhi anonyudza mwana.
• Shandisa manapukeni ane tambo dzeVelcro®. Tambo/tepi inonamira inogona kunamira paganda remwana wako netsaona.
• Cheka wobvisa elastic pakabatana makumbo emanapukeni.
• Isa chimwe chinhu chakaita se silicone gel sheets mukati menapukeni kudzivirira ganda kuti risanamatira pamapundu anenge aumbwa.
• Chenjererai zvikuru pamunosimudza mwana.Dzivisa kusimudza ruoko rwako nekuisa ruoko rwako pasi pehapwa (axilla). Kana mwana wako aine maronda kana maronda pazvidya zvake nemusana, musimudze neruoko rumwe rwakatenderedza zvidya zvake uye rumwe ruoko rwakatsigira musana wake.
• Kurudzirai mwana wenyu kuti ashande nesimba sezvinobvumirwa nechirwere chake cheEB. Kugara pasi kwakadzikama kunogona kukonzera mamwe matambudziko, akadai sekuvimbiwa uye kupera simba kwetsandanyama. Kushambira kurovedza muviri kwakanaka uye kusingakuvadzi muviri.
• Musakurudzira mwana wenyu kuita mabasa emuviri anorema kana mitambo inoita kuti adikitire kana kuti apise.

Kubata zviratidzo zvemwana wako kunogona kuoma dzimwe nguva. Unganzwa kuremerwa uye kuneta. Kumbira chiremba wako mamwe mazano ekuchengetedza mwana wako - newe - wakasununguka sezvinobvira. Zvakare, nekubatana nemapoka ekutsigira vabereki , unogona kugovana zvawakasangana nazvo uye kudzidza nzira itsva dzekutarisira chirwere cheEB chemwana wako.

Ko EB inogona kudzivirirwa here?

Nekuti EB inyaya yemajini, haigone kudzivirirwa . Vanhu vane nhoroondo yemhuri yeEB uye vari kuronga kuva nevana vanogona kuona mazano emajini achibatsira zvikuru pakusarudza marongero emhuri yavo.

Pamusoro pezvo, nyanzvi pari zvino hadzizivi kuti chii chinokonzera rudzi rweEB rwakawanikwa. Saka, vanachiremba havazivi kuti vangarudzivirira sei.

Munhu ane EB angatarisira remangwana rerudzii?

Remangwana revanhu vane EB rinoenderana nerudzi rweEB rwavainarwo uye kuoma kwarwo. Mhando dzakakomba dzechirwere ichi dzinogona kukonzera marwadzo akakomba, kuremara, kuremara, maronda asingapore, uye kunyange kufa nekukurumidza .

Zvisinei, vanachiremba vanogona kukubatsira kudzora zviratidzo zvako. Izvi zvinogona kuitwa nekurapwa kwakakodzera uye, kana zvichidikanwa, nemishonga yekurwadziwa. Kuchengeta ganda rakafukidzwa zvakanaka nemabhandeji asinganamati, anodzivirira zuva rega rega, kugeza nguva dzose, uye kuchengetedza maronda kunogona kubatsira kuderedza kukanganisa kweEB muhupenyu hwako.

Kana uine EB, unofanira kuona chiremba rini?

Iva nechokwadi chekuona chiremba wako muzviitiko izvi:

• Kana uchinetseka kufema.
• Kana uchinetseka kumedza chikafu.
• Kana ronda rako richiratidzika serine hutachiona (ganda richishanduka kuva dzvuku, pepuru, grey, kana chena; kuzvimba kana kuzvimba).
• Kana zviratidzo zvitsva zvikaonekwa.

Ndeipi mibvunzo inokosha yekubvunza chiremba?

Kana uchienda kunoona chiremba, zvakanaka kubvunza mibvunzo yakaita seiyi:

• Ungaziva sei kana ndine EB?
• Kana ndisina EB, ndechipi chimwe chirwere cheganda chandingawana?
• Ndingagadzirisa sei zviratidzo zvangu?
• Mishonga ipi yamunokurudzira? Ine migumisiro yakaipa here?
• Ndeapi marapirwo aunogona kushandisa kumba?
• Chii chimwe chandinofanira kuita kuti ndivandudze zviratidzo zvangu?
• Pane kirimu kana mafuta aunogona kunyora here?
• Ndinofanira kuona chiremba weganda here kana imwe nyanzvi?

Ndeupi musiyano uripo pakati peepidermolysis bullosa (EB) uye bullous pemphigoid?

Chirwere cheBullous pemphigoid chirwere chisingawanzoitiki, chinokonzerwa ne autoimmune ganda. Chinogona kukonzera kuvaviwa, kutsvuka kwakaita semukoko kana maronda azere nemvura. Chirwere cheBullous pemphigoid chinowanzo bata vanhu vane makore anopfuura makumi matanhatu , uye chinowanzo pera mukati memakore mashanu. Zvisinei, muzviitiko zvakakomba, maronda nemavanga zvinogona kukuvadza nhengo dzemukati uye zvinogona kuuraya.

Kunyangwe EB dzimwe nguva ichigona kuva chirwere che autoimmune, inowanzo kukonzerwa nekuchinja kwemajini kunokanganisa collagen muganda rako. EB inowanzoonekwa muhucheche kana muhudiki . Sezvo pasina mushonga weEB, ungangofanira kurarama nezviratidzo kweupenyu hwako hwese.

Pakupedzisira, zvinhu zvekurangarira (Mharidzo Yekuenda Kumba)

Epidermolysis bullosa (EB) chirwere chinonetsa dzimwe nguva. Zvisinei, kana ukapihwa mazano ekurapa, kurapwa, uye kutarisirwa nerudo, unogona kudzora zviratidzo uye kurarama zvakanaka sezvinobvira. Yeuka, hausi wega. Vanachiremba, mhuri, nemapoka ekutsigirana varipo kuti vakubatsire. Saka, usatya, ramba wakasimba, uye tarisana nemamiriro ezvinhu aya.

Kana muine mimwe mibvunzo nezveEB, iva nechokwadi chekutaura nachiremba weganda.

` Epidermolysis bullosa, EB, chirwere cheganda, mabhurugwa, chirwere chemajini, chirwere cheganda revana, kusasimba kweganda