Ðe wò ŋutigbalẽ le ʋuʋum hele dodom ne èka asi eŋu vie gɔ̃ hãa? Ðe wòate ŋu anye Epidermolysis Bullosa (EB)a?

Ɣeaɖewoɣi la, míaƒe ŋutigbalẽ sea veve ŋutɔ, alo? Ne nu sue aɖe dze edzi, alo awu aɖe vuvu hã la, ame aɖewo xɔa abi kple abi le ŋutigbalẽ ŋu bɔbɔe. Vevietɔ esi vidzĩ suewo ƒe ŋutigbalẽ le bɔbɔm ŋutɔ ta la, esesẽna ŋutɔ ne èkpɔ nu mawo tɔgbe. Eyata egbea míele nu ƒom tso dɔléle aɖe si dzɔna ɖe ŋutigbalẽ sia tɔgbe dzi, si mebɔ vie o gake wòle vevie ŋutɔ be woanya. Emae nye epidermolysis bullosa, alo EB kpuie.

Nuka tututue nye epidermolysis bullosa (EB)?

Kpuie ko la, epidermolysis bullosa (EB) nye dɔléle si ƒe dome míenyi . Ena wò ŋutigbalẽ te ŋu gblẽna ŋutɔ eye wòvuvuna heɖea ɖa bɔbɔe. Ɣeaɖewoɣi la, ne ètsɔ awu tutu wò ŋutigbalẽ alo ƒo wò le teƒe aɖe gɔ̃ hã la, abi kple abi ate ŋu anɔ ŋuwò. Le ame aɖewo gome la, ate ŋu anɔ bɔbɔe eye asiwo, abɔta, klowo, kple afɔwo koe ana ʋuʋudedi nave wo. Gake le nɔnɔme sesẽwo me la, ʋuʋudedi kple abi siawo ate ŋu adze le ŋutilãa ƒe akpa sia akpa. EB ƒe dzesiwo ate ŋu atso esiwo mesẽ o dzi va ɖo esiwo nu sẽ ŋutɔ dzi .

Ðo ŋku edzi be ɣeaɖewoɣi la, ʋuʋudedi siawo ate ŋu ado ɖe nu me, ŋɔti (nutome), ŋkuwo, kple ŋutilã ƒe akpa bubu siwo le eme la me. Ne ʋuʋudedi siawo da gbe le wo ŋu la, woate ŋu agblẽ abi siwo me vevesese le ɖi. Le nɔnɔme sesẽwo me la, ʋuʋudedi kple abi siawo ate ŋu agblẽ nu le ŋutilãa ƒe ŋutinu ememetɔwo ŋu, si ate ŋu ade ame ƒe agbe afɔku me.

Nukawoe nye EB ƒomevi veviwo?

EB ƒomevi vevi ene li, siwo wotsɔa ŋutigbalẽ ƒe ƒuƒoƒo si ŋu wògblẽ nu le la dea dzesii.

1. EB Simplex (EBS): Esiae nye EB ƒomevi si bɔ wu . Ate ŋu atso nu fafɛ, si mevea ame boo o, va ɖo vevesese gã, sesẽ, le ame aɖewo me. Aɖuɖɔtoeawo dzɔna le ŋutigbalẽa ƒe akpa si le etame, si nye ŋutigbalẽa ƒe akpa si woyɔna be epidermis . Ƒã hafi abi nɔa ame ŋu ne ʋuʋudedi siawo da gbe le wo ŋu vɔ.

2. Junctional EB (JEB): Le JEB me la, ʋuʋudediwo dona le nu me kple yaƒoƒomɔ̃ me. Esia mebɔ vie o , eye ate ŋu atso esi nu mesẽ o (si mefa vie o, vevesese vie) dzi va ɖo esi nu sẽ dzi.

3. Dystrophic EB (DEB): Le DEB me la, ʋuʋudediwo dona le ŋutigbalẽa ƒe titina, si nye ŋutigbalẽa . Esia hã ate ŋu ato vovo tso esi nu mesẽ o dzi va ɖo esi nu sẽ dzi.

4. Kindler Syndrome: Le Kindler Syndrome me la, ʋuʋudedi ate ŋu adzɔ ɖe ŋutigbalẽa ƒe akpa vovovoawo katã kloe dzi. Esia mebɔ kura o .

Ðɔktawo nɔa te ɖe wò ŋutigbalẽ ƒe ƒuƒoƒo siwo ŋu wògblẽ nu le dzi dea vovototo EBS, JEB, kple DEB dome. Le Kindler ƒe dɔlélea me la, ʋuʋudedi ate ŋu adze le wò ŋutigbalẽ ƒe akpa vovovowo katã.

Ameka ŋue nɔnɔme sia gblẽa nu le wu? Aleke gbegbe wòbɔe?

EB ate ŋu akpɔ ŋusẽ ɖe amesiame dzi. Ameƒomevi, to, alo ŋutsu alo nyɔnu ɖesiaɖe ate ŋu axɔ EB. Gake la,Ne dɔlélea le dziwòlawo dometɔ ɖeka ŋu la, anɔ eme be EB adze dziwò.

Togbɔ be ebɔ hã la, akɔntabubu siwo le United States ɖee fia be ame ɖeka le 50,000 ɖesiaɖe me koe EB le. Esia fia be enye nɔnɔme si mebɔ kura o.

Ŋusẽ kawoe EB ate ŋu akpɔ ɖe ŋutilãa dzi?

Le EB ƒe dɔléle sesẽwo me la, ŋkuwo ate ŋu avuvu eye wòana ame ƒe ŋkuwo nagate ŋu akpɔ nu gɔ̃ hã o . Ɣeaɖewoɣi la, abi sesẽwo ate ŋu adze ŋutigbalẽ kple lãmekawo dzi eye woƒe lãme gblẽ, si wɔnɛ be womate ŋu aʋuʋu asibidɛwo, asiwo, afɔwo, kple ƒunukpeƒewo nyuie o. Ame aɖewo siwo ŋu EB le la ate ŋu axɔ ŋutigbalẽ me kansa ƒomevi aɖe si woyɔna be squamous cell carcinoma .

Le dɔléle siwo nu sẽ wu me la, ku ate ŋu adzɔ ɣeaɖewoɣi le vidzĩme . Esia tso nɔnɔmewo abe dɔlékui sesẽwo (le kpɔɖeŋu me , sepsis ), gbɔgbɔ sesẽ le yaƒoƒo ƒe mɔxexe, tsikuɖiɖi, kple nunyuimakpɔɖu ta.

Ðe EB ate ŋu awu amea?

Esia nɔ te ɖe EB ƒomevi si le asiwò dzi ŋutɔŋutɔ. EB ƒomevi siwo mesẽ o, siwo mesẽ boo o la mewua ame o. Gake amesiwo ŋu EB dɔléle sesẽwo le ƒe agbenɔƒe ate ŋu atso vidzĩme va ɖo abe ƒe 30 ene. Eyata nɔnɔme sia nye esi hiã be woalé ŋku ɖe eŋu vevie.

Nukawoe nye EB ƒe dzesiwo?

EB ƒe dzesiwo toa vovo le eƒe ƒomevi nu. Zi geɖe la , dzesi siawo dzena ne ènye vidzĩ alo ɖevi sue . Dzesi aɖewo bɔ ɖe ƒomevi vovovowo dome. EB ƒe dzesi vevi aɖewoe nye esi:

• Ʋuʋudedi siwo le ŋutigbalẽ (asi, afɔ, abɔta, klo) alo ŋutilã me.
• Ŋutilã si le asibidɛwo kple afɔkpodziwo ŋu ƒe ƒoƒo, si wɔnɛ be wosena le wo ɖokui me abe ʋuʋudedi ene.
• Ʋumenugbagbevi dzĩwo dzi ɖeɖe kpɔtɔ (Ʋusɔgbɔdɔ).
• Asibidɛ siwo lé ɖe wo nɔewo ŋu (asibidɛ alo afɔbidɛ siwo wotsɔ tsaka).
• Asibidɛ kple afɔbidɛ siwo gblẽ kple/alo esiwo le kpekpem.
• Akɔta sue ɣi siwo le abe ʋuʋudedi ene (milia) ƒe dzedzeme le ŋutigbalẽa ŋu.
• Nuɖuɖu mimi sesẽ (dysphagia).
• Tsitsi si wokpɔ mɔ na ƒe anyimanɔmanɔ le ɖevi me.
• Aɖu siwo mele tsitsim abe alesi wokpɔ mɔe ene o ( hypoplasia ).

Nukae hea EB vɛ?

Nusi koŋ gbɔ EB tsonae nye domenyiŋusẽfianu 18 dometɔ ɖeka ƒe tɔtrɔ alo eƒe gbegblẽ . Domenyiŋusẽfianu aɖe si bu alo gblẽ le amesiwo ŋu dɔléle sia le ŋu si kpena ɖe ame ŋu wowɔa protein si woyɔna be collagen . Abe alesi nènyae ene la, collagen ye naa ŋusẽ kple wɔwɔme kadodoŋusẽwo abe míaƒe ŋutigbalẽ ene. Eyata le domenyiŋusẽfianu ƒe gbɔdzɔgbɔdzɔ sia ta la, ŋutigbalẽa ƒe akpa eveawo, siwo nye lãkusi kple lãkusi, medoa ka kple wo nɔewo le mɔ si sɔ nu o. Esia wɔnɛ be ŋutigbalẽa va nɔa gbagbãm ŋutɔ, eƒona bɔbɔe, eye wòxɔa abi.

Zi geɖe la, EB nyea dɔléle si ƒe dome wonyi , si fia be ne edzilawo dometɔ ɖeka xɔe la, ɖeviawo ate ŋu anyie ƒe dome.

Gake ƒã ŋutɔ be EB ate ŋu adzɔ hã abe dɔlélenutsiŋutete ƒe dɔléle si woxɔ ene .

Nu vevitɔ kekeakee nye be EB menye dɔléle si xɔa ame me o. Zi geɖe la, domenyiŋusẽfianue wònyena. Eyata ne èle kadodo me kple ame aɖe si ŋu EB le la, màxɔe o.

Aleke nàwɔ anya kple kakaɖedzi be EB le ŋuwò? (Dɔléle ƒe dzesi) .

Ðɔktawo ate ŋu anya EB to ŋutigbalẽ ƒe lãmenugbagbeviwo ɖeɖe , si bia be ɖɔkta naɖe ŋutigbalẽ sue aɖe atsɔ adoe kpɔ le nusuekpɔmɔ̃ me.

Tsɔ kpe ɖe eŋu la, domenyiŋusẽfianu dodokpɔ ate ŋu ade dzesi domenyiŋusẽfianu si gblẽ eye woaɖo kpe EB ƒomevi dzi. Dzila siwo le ɖoɖo wɔm be yewoadzi vi hã ate ŋu ado domenyiŋusẽfianu ƒe dodokpɔ do ŋgɔ na vidzidzi be woakpɔe ɖa be afɔku le eme be yewoadzi vi si ŋu EB le hã.

Nukawoe nye atike siwo wozãna na EB?

Nublanuitɔe la, fifia la, womekpɔ atike aɖeke na EB . Gake atikewɔwɔwo ate ŋu akpe ɖe ame ŋu:

• Ekpena ɖe ame ŋu be ʋuʋudedi nagadzɔ o.
• Beléle na ʋuʋudedi kple ŋutigbalẽ nyuie xea mɔ na kuxiwo.
• Edaa nunyiame ƒe kuxi siwo ate ŋu atso ʋuʋudedi siwo le nu me alo ŋɔti me gbɔ.
• Vevesese dzi ɖuɖu.

Be woaxe mɔ ɖe ŋutigbalẽ ƒe gbegblẽ kple ʋuʋudedi kple abi ƒe dzɔdzɔ le ʋuʋudedi ta nu la, ɖɔktawo kafu nu siwo gbɔna:

• Do awu falɛfalɛ siwo me mekɔ o siwo wotsɔ dzɔdzɔme ka wɔe. Awu dodo tso eme kple gota ate ŋu akpe ɖe ŋuwò nàɖe lãgbalẽ siwo le wò ŋutigbalẽ ŋu la dzi akpɔtɔ.
• Ƒo asa na dzoxɔxɔ si gbɔ eme; na xɔwo nanɔ dzoxɔxɔ si me wofa le, si mewɔa tɔtrɔ o me.
• Ƒo asa na ŋdɔkutsu dzatsɛ, alo nàdo ɣe ƒe keklẽŋusẽtike ne èle ɣe ƒe ŋkumewu kple kposɔwo zãm.
• Zã aŋetu tɔxɛwo nàtsɔ akpɔ ŋutigbalẽa ta – zã aŋe siwo meléna ɖe nu ŋu o kple kasɛt, gauze si woxatsa, kple bubuawo.

Be nàda ƒunukpeƒetetedɔ la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò be:

• Si amiwo ɖe abiwo ŋu gbesiagbe.
• Zã atike siwo wotsɔ blaa aŋenuwoe nàtsɔ akpe ɖe ʋuʋudediwo ŋu woahaya eye woaxe mɔ ɖe dɔlékuiwo xɔxɔ nu.
• No atike be nàɖu vevesesea dzi.

Be nàda dɔlékuiwo la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò:

• No dɔlékuiwutike siwo woano alo nàde dɔlékuiwutike si wotsɔna tsia dɔlékuiwutikewoe.
• Zã abi ƒe nutsyɔnu tɔxɛwo na abi siwo mehaya o.

Be nàxe mɔ ɖe nunyiame ƒe kuxiwo kple nuɖuɖu sesẽ le nu me alo ŋɔti me ʋuʋudedi ta nu la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò:

• Ne èle nu nam viwòa la, zã vidzĩ ƒe aŋetu si me no tɔxɛ aɖe le .
• Tsɔ ŋkumeɖonu alo atikekui na nuɖuɖu vidzĩa.
• Tsɔ tsi vi aɖe de nuɖuɖu siwo wofli me be woaɖiɖi hafi ana wo. Esia ana wo mimi nanɔ bɔbɔe.
• Ƒo nuɖuɖu falɛfalɛ geɖe wu abe mɔli, nuɖuɖu siwo wofli, pudding, kple akɔɖumi ene .
• Wotsɔa nuɖuɖu naa amewo le dzoxɔxɔ si me dzoxɔxɔ le (menye dzoxɔxɔ akpa o).
• Kpɔ nuɖuɖuŋutinunyala aɖe ɖa nàdzro wò nunyiame ƒe hiahiã tɔxɛwo me.

Le EB ƒe dɔléle sesẽwo me la, ahiã be woawɔ dɔ na wò hã . Ne nuɖuɖutome (si nye mɔ̃ si tsɔa nuɖuɖu tso nu me yia dɔgboa me) xe mɔ na ʋuʋudedi kple abi la, woate ŋu awɔ dɔ nɛ be wòakeke. Ame aɖewo ate ŋu ato nuɖuɖutome keŋkeŋ eye woatsɔ nuɖuɖudoƒe aɖe ade eme be wòatsɔ nuɖuɖu ayi dɔgboa me tẽ. Woate ŋu awɔ amekoko hã atsɔ ama asibidɛ siwo lé ɖe wo nɔewo ŋu le ʋuʋudediawo ta.

Aleke amesi ŋu EB le kpɔa eɖokui dzii?

Ne EB le ŋuwò la, aɖaŋuɖoɖo siawo akpe ɖe ŋuwò nàlé be na ɖokuiwò:

• Mlɔ agbalẽ kple akɔtaɖonu siwo wotsɔ dzɔdzɔme ka falɛfalɛwo abe seda alo satin ene wɔe dzi.
• Do afɔkpa nyui siwo mexea wò ŋutilã o.
• Ƒo asa na tsitretsitsi alo azɔlizɔzɔ ɣeyiɣi didi.
• Ƒo asa na ŋutigbalẽa ƒoƒo alo eƒoƒo. De atike siwo tsia ʋuʋudedi nu be wòaɖe ʋuʋudedi dzi akpɔtɔ.
• Lé ŋku ɖe nusiwo ƒo xlã wò ŋu eye nàƒo asa na asikaka wò ŋutigbalẽ ŋu alo aƒoe le vo me.
• De tsi wò ŋutigbalẽ ɣesiaɣi be wòaɖe ʋuʋudedi dzi akpɔtɔ.
• Ne ʋuʋudediwo do la, tsɔ aŋe si me dɔlékui mele o alo lãgbalẽŋudɔwɔnu dzadzɛ ƒo wo kaba.
• Zã aŋe si meléna ɖe nu ŋu o. Alo nàtsɔ ami si wotsɔna ƒoa ami (VaselineTM) alo ami si sɔ na ŋutigbalẽ (abe AquaphorTM ene) asisi ɖe aŋea ŋu be wòagalé ɖe ŋutigbalẽa ŋu o.

Aleke woawɔ akpɔ ɖevi si ŋu EB le dzi? Aɖaŋuɖoɖo aɖewo na dzilawo

Ne EB le viwòa ŋu la, woƒe nuhiahiãwo to vovo na ame bubuwo. Ðewohĩ womate ŋu agblɔ woƒe vevesesea o. Aɖaŋuɖoɖo siawo ate ŋu akpe ɖe viwòa ŋu wòaɖe dzi ɖi alesi wòanya wɔe:

• Klɔ asi nyuie hafi nàka asi viwòa ƒe ŋutigbalẽ ŋu.
• Ƒo asa na latex-asigɛwo zazã, elabena woate ŋu ana ʋua ƒe ʋuʋu nadzi ɖe edzi.
• Ne èle viwòa klɔm la, le esi teƒe be nàtsɔ ŋutilã bliboa ade tsize si me tsi yɔ fũu me zi ɖeka la, klɔ ŋutigbalẽa ƒe akpa ɖesiaɖe ɖekaɖeka.
• Le esi teƒe be nàtsɔ viwò yeyea ade aklala me la, bu eŋu be yeade atike siwo xɔa tsi ɖe wo ŋu.
• Zã aklala siwo ŋu Velcro® ƒe ka le. Ka/tape si wotsɔ léa nu ɖe ​​nu ŋu ate ŋu alé ɖe viwòa ƒe ŋutigbalẽ ŋu le manyamanya me.
• Lã elastic la eye nàɖee ɖa le afisi wobla aŋea ƒe afɔwo le.
• De nane abe silicone gel sheets ene ɖe diaper la ƒe eme be ŋutigbalẽa nagalé ɖe ʋuʋudedi siwo do la ŋu o.
• Kpɔ nyuie ŋutɔ ne èle ɖevia kɔm.Ƒo asa na nu kɔkɔ to wò asiwo dada ɖe abɔta te (axilla). Ne ʋuʋudedi alo abi le viwòa ƒe ata kple akɔta la, kɔe ɖe dzi kple asi ɖeka ƒo xlã eƒe ata eye nàtsɔ asi evelia alé eƒe akɔta.
• De dzi ƒo na viwòa be wòanɔ dɔ dzi alesi woƒe EB nɔnɔmea ɖe mɔe. Ne èbɔbɔ nɔ anyi kpoo ate ŋu ahe kuxi bubuwo abe dɔmeɖui kple lãmekawo ƒe gbagbã ene vɛ . Tsiƒuƒu nye kamedede nyui aɖe si mekpɔa ŋusẽ ɖe ame dzi boo o.
• Mègade kamedede sesẽ alo fefe siwo ana viwòa nafi fi alo axɔ dzo ƒe dzi ƒo o.

Viwòa ƒe dzesiwo gbɔ kpɔkpɔ ate ŋu asesẽ ɣeaɖewoɣi. Ðewohĩ àse le ɖokuiwò me be nu te ɖe ye dzi eye ɖeɖi te ye ŋu. Bia wò ɖɔkta be wòana aɖaŋuɖoɖo bubuwo be viwòa – kple wò – naɖe dzi ɖi alesi nàte ŋui. Azɔ hã, ne ège ɖe dzilawo ƒe kpekpeɖeŋunahawo me la , àte ŋu agblɔ wò nuteƒekpɔkpɔwo eye nàsrɔ̃ mɔ yeye siwo dzi nàto akpɔ viwò ƒe EB nɔnɔmea gbɔ.

Ðe woate ŋu axe mɔ ɖe EB nua?

Esi wònye domenyiŋusẽfianue EB nye ta la, womate ŋu axe mɔ ɖe enu o . Ame siwo ƒe ƒome ŋutinya me EB le eye wole ɖoɖo wɔm be yewoadzi vi ate ŋu akpɔe be domenyiŋusẽfianu ŋuti aɖaŋuɖoɖo akpe ɖe yewo ŋu ŋutɔ le nyametsotso wɔwɔ le alesi yewoawɔ ɖoɖo ɖe yewoƒe ƒomea ŋu me.

Tsɔ kpe ɖe eŋu la, eŋutinunyalawo menya nusi hea EB ƒe nɔnɔme si woxɔ la vɛ fifia o. Eyata ɖɔktawo menya alesi woawɔ axe mɔ ɖe enu o.

Etsɔme ka ƒomevie amesi ŋu EB le ate ŋu akpɔ mɔ na?

Amesiwo ŋu EB le ƒe etsɔme nɔ te ɖe EB ƒomevi si le wo ŋu kple eƒe sesẽ dzi. Dɔlélea ƒe ƒomevi sesẽwo ate ŋu ana ame nase veve vevie, ame nazu nuwɔametɔ, ame nazu nuwɔametɔ, abi siwo mehayana gbeɖe o, eye wòaku kaba gɔ̃ hã .

Ke hã, ɖɔktawo ate ŋu akpe ɖe ŋuwò nàɖu wò dzesiwo dzi. Woate ŋu awɔ esia to atike nyuiwo zazã me eye ne ehiã la, woate ŋu azã vevesesenutsitikewo. Ne ètsɔ atike siwo meléna ɖe ŋutigbalẽa ŋu o, siwo kpɔa ame ta la tsyɔ ŋutigbalẽa dzi nyuie ŋkeke eve ɖesiaɖe, tsilele enuenu, kple abidzikpɔkpɔ ate ŋu akpe ɖe ŋuwò nàɖe ŋusẽ si EB kpɔna ɖe wò agbe dzi dzi akpɔtɔ.

Ne EB le ŋuwò la, ɣekaɣie wòle be nàkpɔ ɖɔkta?

Kpɔ egbɔ be yeyi ɖɔkta gbɔ le nɔnɔme siawo me:

• Ne gbɔgbɔ sesẽ na wò.
• Ne nuɖuɖu mimi sesẽ na wò.
• Ne edze abe dɔlékui le wò abi ŋu ene (ŋutilã trɔ zu dzĩ, aŋutiɖiɖi, aŋutiɖiɖi, alo ɣie; exɔ abi alo vuvu).
• Ne dzesi yeyewo do.

Nya vevi kawoe wòle be míabia ɖɔktaa?

Ne èyi ɖɔkta gbɔ la, anyo be nàbia nya siawo tɔgbe:

• Aleke nàwɔ anya ne EB le ŋunye?
• Ne EB mele ŋunye o la, ŋutigbalẽdɔ bubu kae ate ŋu anɔ ŋunye?
• Aleke mawɔ akpɔ nye dzesiwo gbɔe?
• Atike kawoe nèkafu? Ðe woƒe nugbegblẽ le ame ŋua?
• Aƒeme atikewɔwɔ kawoe nèkafu?
• Nukae wòle be mawɔ be nye dzesiwo nanyo ɖe edzi?
• Ðe kreme alo ami aɖe li si nàte ŋu aŋlɔ na amea?
• Ðe wòle be makpɔ ŋutigbalẽŋutinunyala alo eŋutinunyala bibi bubua?

Vovototo kae le epidermolysis bullosa (EB) kple bullous pemphigoid dome?

Bullous pemphigoid nye ŋutigbalẽdɔléle si mebɔ o, si dɔlélenutsiŋutete ŋutɔ hena vɛ. Ate ŋu ana ʋuʋudedi siwo le abe atɔ ene alo ʋuʋudedi siwo me tsi yɔ fũu naƒo. Zi geɖe la, bulous pemphigoid dzea amesiwo xɔ wu ƒe 60 dzi , eye zi geɖe la, edzona le ƒe atɔ̃ me. Gake le nɔnɔme sesẽwo me la, ʋuʋudedi kple abi ate ŋu agblẽ nu le ame ƒe ŋutinuwo ŋu eye wòawu ame.

Togbɔ be EB ate ŋu anye dɔléle si dɔlélenutsiŋutete wɔna ɣeaɖewoɣi hã la, zi geɖe la, domenyiŋusẽfianu ƒe tɔtrɔ si gblẽa nu le kolagen si le wò ŋutigbalẽ me ŋu gbɔe wòtsona. Zi geɖe la , EB dzena le vidzĩme alo ɖevimenɔɣi . Esi wònye be atike aɖeke meli na EB o ta la, ɖewohĩ ahiã be nànɔ agbe kple dzesiwo le wò agbemeŋkekewo katã me.

Mlɔeba la, nusiwo dzi wòle be woaɖo ŋkui (Take-Home Message) .

Epidermolysis bullosa (EB) nye nɔnɔme sesẽ aɖe ɣeaɖewoɣi. Gake ne èɖo aɖaŋu na wò nyuie le atikewɔlawo me, da dɔ na wò, eye nèlé be nɛ lɔlɔ̃tɔe la, àte ŋu akpɔ dzesiawo gbɔ ahanɔ agbe nyuie alesi nàte ŋui. Ðo ŋku edzi be menye wò ɖeka koe o. Ðɔktawo, ƒometɔwo, kple kpekpeɖeŋunahawo katã le afima be yewoakpe ɖe ŋuwò. Eya ta, mègavɔ̃ o, sẽ ŋu, eye nàdze ŋgɔ nɔnɔme sia.

Ne nyabiase bubu aɖewo gale asiwò ku ɖe EB ŋu la, kpɔ egbɔ be yeƒo nu kple ŋutigbalẽŋutinunyala.

` Epidermolysis bullosa, EB, ŋutigbalẽ ƒe dɔléle, ʋuʋudedi, domenyiŋusẽfianu ƒe dɔléle, ɖeviwo ƒe ŋutigbalẽ ƒe dɔléle, ŋutigbalẽ ƒe gbagbã