Ne abi sue aɖe le wò ŋutilã ŋu, alo ne wohe wò aɖu la, ɖe ʋua yia edzi le dodom evɔ medzudzɔ oa? Alo ɖe abi blɔwo nɔa wò ŋutilã ŋu ɣeaɖewoɣi evɔ mèƒoa afi aɖeke oa? Ðe nèkpɔa abi le wò ŋutilã katã ŋu, vevietɔ ne viwò suea dze zɔzɔ alo zɔzɔ gɔmea? Ne nu siawo tɔgbe dzɔ la, nusi gbɔ wòtso ate ŋu anye dɔléle aɖe si woyɔna be ʋusɔgbɔdɔ . Mègavɔ̃ ne èse ŋkɔ sia o. Ne èwɔ atike nyuitɔ la , àte ŋu anɔ agbe si sɔ, si me dzidzeme le. Mina míaƒo nu tso esia ŋu eme nakɔ eye wòanɔ bɔbɔe egbea.
Kpuie ko la, nukae nye Hemophilia A?
Kpuie ko la, Hemophilia A nye nɔnɔme si me míaƒe ʋu metsina nyuie o. Zi geɖe la, ne míexɔ abi la, míaƒe ʋu ƒoa ƒu be wòadzudzɔ ʋu si le dodom. Protein tɔxɛ siwo le míaƒe ʋu me kpena ɖe esia ŋu. Míeyɔa esiawo be "nu siwo nana ʋu ƒe sisi nɔa lãme na ame."
Ame si ŋu ʋusɔgbɔdɔ A le la mewɔa ʋumenugbagbeviɣidɔ si nye Factor VIII wòde edeƒe o. Alesi Factor VIII protein sia dzi ɖe kpɔtɔe dzie wokpɔa dɔlélea ƒe sesẽme. Le esia nu la, womae ɖe akpa etɔ̃ me:
- Ʋusɔgbɔdɔ si nu mesẽ o: Factor VIII ƒe agbɔsɔsɔ nɔa anyi vaseɖe afi aɖe.
- Ʋusɔgbɔdɔ si sɔ: Factor VIII ƒe agbɔsɔsɔ le sue ŋutɔ.
- Ʋusɔgbɔdɔ sesẽ: Factor VIII ƒe agbɔsɔsɔ le sue ŋutɔ alo mele eme o.
Zi geɖe la, esia nyea domenyiŋusẽfianu ƒe dɔléle si nɔa ƒomewo me. Gake le ame siwo ade akpa etɔ̃lia me la, ame yeye ate ŋu axɔ dɔlélea evɔ ƒomea me tɔ aɖeke maxɔe o.
Nukae hea ʋusɔgbɔdɔ vɛ?
Esia nye nusi ƒe dome míenyi to domenyiŋusẽfianuwo dzi. Bu eŋu kpɔ, domenyiŋusẽfianuwoe dea dzesi míaƒe ŋutilã ƒe nɔnɔme ɖesiaɖe. X domenyiŋusẽfianu eve (XX) le nyɔnu si, gake X domenyiŋusẽfianu ɖeka kple Y domenyiŋusẽfianu ɖeka (XY) le ŋutsu si.
Domenyiŋusẽfianu ƒe gbɔdzɔgbɔdzɔ si do ƒome kple ʋusɔgbɔdɔ la le X domenyiŋusẽfianu dzi .
Eyata ne vidada nye domenyiŋusẽfianu sia si gblẽ ƒe "tsɔla" la, zi geɖe la, meɖea dzesi aɖeke fiana o. Elabena eƒe X domenyiŋusẽfianu bubu si le lãmesẽ me la wɔa factor VIII protein si hiã. Gake ne via nyi X domenyiŋusẽfianu sia si gblẽ la ƒe dome la, ʋusɔgbɔdɔ adze viŋutsu ma dzi. Elabena X domenyiŋusẽfianu ɖeka koe le ŋutsuvi si. Le susu sia ta la, ʋusɔgbɔdɔ bɔ ɖe ŋutsuviwo me wu nyɔnuviwo.
Ƒã hafi ame tsitsi siwo xɔ tso ƒe 60 va ɖo ƒe 80 ate ŋu axɔ ʋusɔgbɔdɔ. Edzɔna ne ŋutilãa ƒe dɔlélenutsiŋutete dze ʋuka siwo le lãmesẽ me dzi. Ate ŋu adzɔ le fufɔɣi, le kansa , kple dɔléle bubu siwo dɔlélenutsiŋutete hena vɛ hã me.
Nukawoe nye ʋusɔgbɔdɔ ƒe dzesiwo?
Dzesiawo nɔ te ɖe ne wò nɔnɔmea mesẽ o, le titina, alo sesẽ dzi.
| Dɔléle ƒe agbɔsɔsɔme | Nusiwo woate ŋu akpɔ |
|---|---|
| Ʋusɔgbɔdɔ si nu mesẽ o | Zi geɖe la, amekoko, aɖuɖeɖe, vidzidzi, alo afɔku gã aɖe megbe ko hafi ʋu si dona vevie. Ame aɖewo menya gɔ̃ hã be ele yewo ŋu o vaseɖe esime wova tsi. |
| Ʋusɔgbɔdɔ si sɔ gbɔ | - Ne woxɔ abi la, ʋu dona fũ akpa. - Ɣeaɖewoɣi la, ʋu dona le ame ŋu le susu aɖeke manɔmee. - Ŋutilãa ƒoa abi bɔbɔe eye wòtrɔna zua blɔ. - Ne wodo atike na wò la, exɔa ɣeyiɣi didi hafi ʋu dona. |
| Ʋusɔgbɔdɔ sesẽ | Zi geɖe la, ʋu dona le ame ŋu ne womexɔ abi o gɔ̃ hã. Ʋu ate ŋu ado le ƒunukpeƒewo kple lãmekawo me vevietɔ . Esia vea ame ŋutɔ. |
Nuxlɔ̃amedzesi siwo fia be ʋu le dodom le ahɔhɔ̃ me
Ne ame si ŋu ʋusɔgbɔdɔ sesẽ le la ƒo ta vie gɔ̃ hã la, ʋu ate ŋu ado le ahɔhɔ̃a me. Esia nye nudzɔdzɔ kpata sesẽ aɖe. Ne èxɔ abi le ta me eye dzesi siwo gbɔna dometɔ aɖe le ŋuwò la, yɔ wò ɖɔkta enumake alo yi dɔwɔƒe si te ɖe ŋuwò le nudzɔdzɔ kpatawo gbɔ (ETU) gbɔ.
- Taɖuame sesẽ si nɔa anyi ɖaa
- Ʋuʋudedi
- Alɔ̃dɔdɔ enuenu alo ɖeɖiteameŋu si gbɔ eme
- Gbɔdzɔgbɔdzɔ kpata alo azɔlizɔzɔ sesẽ
- Nukpɔkpɔ eve
- Alɔ̃madɔmadɔ
Aleke woawɔ anya dɔlélea?
Ne ʋusɔgbɔdɔ le wò ƒomea me la, àte ŋu ana woado viwòa kpɔ be dɔlélea le eŋu hã esime nèfɔ fu. Gake afɔku aɖewo le dodokpɔ siawo me, eyata ele be nàdzro wo me kple wò ɖɔkta.
Zi geɖe la, wokpɔa ʋusɔgbɔdɔ sesẽwo le ɖevi suewo ŋu le woƒe agbenɔƒe gbãtɔ me. Ne viwòa dze ʋuʋu gɔme eye wòdze ʋuʋu gɔme eye wòdze dzesidede abi siwo kɔ ɖe dzi le woƒe ŋutilã ŋu la, ƒo nu tso eŋu na wò ɖɔkta.
Ðɔktaa ate ŋu abia nya siawo tɔgbe wò:
- Aleke wòdzɔe be abi siawo kple ʋu nɔ dodom?
- Ɣeyiɣi didi kae ʋu si le dodom la le edzi yim?
- Ðe atike aɖewo li siwo ɖeviwo noa?
- Ðe ʋu ƒe sisi ƒe kuxi le ame aɖe ŋu le wò ƒomea mea?
Emegbe, woawɔ ʋudodokpɔ zi geɖe atsɔ aɖo kpe dɔlélea dzi. Woate ŋu aɖo wò ɖe ʋumenugbagbeviɣidɔdala hã gbɔ.
| Dodokpɔ ƒe Ŋkɔ | Nukae nèkpɔ le esia me? |
|---|---|
| Ʋu Xexlẽme Blibo (CBC) . | Woléa ŋku ɖe lãmenugbagbevi ƒomevi siwo le ʋua me kple ʋumenugbagbeviɣi ƒe agbɔsɔsɔ ŋu. Esia ate ŋu akpe ɖe ame ŋu wòanya ne ʋusɔgbɔdɔ le ʋu si dona le ame ŋu ta. |
| PT kple aPTT dodokpɔwo | Edzidzea ɣeyiɣi didi si wòxɔna hafi ʋu natsi. Zi geɖe la, aPTT ƒe asixɔxɔ dzina ɖe edzi le ʋusɔgbɔdɔ me. |
| Factor VIII kple Factor IX dodokpɔwo | Wodzidzea protein sia ƒe agbɔsɔsɔ si tututu le ʋua me. Ne factor VIII mesɔ gbɔ o la, ke enye ʋusɔgbɔdɔ A. |
| Domenyiŋusẽfianu Dodokpɔ | Woate ŋu ade dzesi domenyiŋusẽfianu ƒe tɔtrɔ si hea dɔlélea vɛ. Le nyɔnu gome la, woate ŋu anya nenye be dɔlélea tsɔlae wònye. |
Aleke wowɔa atike nɛ?
Mɔnu si woatsɔ ada dɔae nɔ te ɖe alesi dɔlélea nu sẽe, ƒe si nèxɔ, kple wò ŋutɔ wò nuhiahiãwo dzi. Taɖodzinu vevitɔ si le atikewɔwɔa ŋue nye be woaɖɔli protein si nye factor VIII si bu le ŋutilãa me. Woyɔa esia be factor replacement therapy . Togbɔ be esia medaa dɔlélea keŋkeŋ o hã la, ate ŋu akpe ɖe ŋuwò nàɖu ʋu ƒe dodo dzi eye wòana nànɔ agbe si sɔ.
Atikewɔwɔ ƒomevi eve li:
- Mɔxexeɖedɔléle Nu ƒe Atikewɔwɔ: Woado factor VIII edziedzi le ɖoɖowɔɖi si ŋu wowɔ ɖoɖo ɖo nu be woaxe mɔ ɖe ʋu ƒe dodo nu, tsɔ wu be woalala be ʋu nado. Esia le vevie ŋutɔ na amesiwo ŋu ʋusɔgbɔdɔ sesẽ le.
- Atikewɔwɔ si Wodi: Ne ʋu le dodom le ame ŋu ko hafi woaxɔ atike .
Factor VIII ƒe atike ƒomevi eve li:
1. Recombinant Factor VIII: Nusi wowɔ le nudokpɔƒe to domenyiŋusẽfianu ƒe mɔ̃ɖaŋununya zazã me. Esiae nye esi wozãna wu egbea.
2. Nu VIII si wokpɔna tso ʋumenugbagbevi dzĩ me: Nusi wokpɔna tso amegbetɔ ƒe ʋumenugbagbeviɣi me.
Ame siwo ŋu ʋusɔgbɔdɔ A si nu mesẽ o va ɖo esi mesẽ o hã ate ŋu azã atike aɖe si woyɔna be Desmopressin (DDAVP) . Esia wɔa dɔ to asiɖeɖe le factor VIII si wodzra ɖo ŋu ɖe ʋua me me.
Tsɔ kpe ɖe eŋu la, wozãa atike siwo woano abe Tranexamic Acid, si xea mɔ na ʋu ƒe sisi ƒe gbagbã ene hã le nɔnɔmewo abe aɖuɖeɖe ene me.
Vevietɔ: Esi wònye be ahiã be woado ʋu na amesi ŋu ʋusɔgbɔdɔ le enuenu ta la, ele vevie ŋutɔ be woado atike na Aklãdɔléle A kple B. Bia wò ɖɔkta tso esia ŋu.
Aleke nèkpɔa gbesiagbegbenɔnɔ gbɔe?
Ne èle agbe kple ʋusɔgbɔdɔ la, ele be nàbu dedienɔnɔ ŋu vie.
- Do vevie nu: Kamedede doa ŋusẽ lãmekawo. Lãmetsi sesẽwo kpɔa ƒunukpeƒewo ta nyuie. Gake ƒo asa na kadodo ƒe kamedefefewo abe rugby kple kɔdada ene. Tsiƒuƒu, azɔlizɔzɔ, kple gasɔdodo (si me gakuku le) nye tiatia nyuiwo. Ðo dze kple wò ɖɔkta tso dɔwɔna siwo sɔ na wò ŋu.
- Takpɔ ɖeviwo ta: Ne ɖevi sue aɖe le asiwò la, do klonu, abɔtawu, kple gakuku ne èle fefem. Takpɔ ɖokuiwò ta tso xɔmenuwo ƒe nugbɔ ɖaɖɛ siwo le wò aƒeme la si me.
- Aɖuwo ƒe lãmesẽ:Lé aɖuwo ƒe dzadzɛnyenye nyui me ɖe asi. Klɔ aɖuwo gbesiagbe. Esia ate ŋu akpe ɖe ame ŋu be aɖuɖeɖe kple aɖudɔdada gãwo ƒe hiahiã dzi naɖe akpɔtɔ. Hafi nàyi aɖudɔdala gbɔ la, kpɔ egbɔ be yegblɔ nɛ be ʋusɔgbɔdɔ le ye ŋu.
- Atike siwo mele be woano o: Vevesesenutsitikewo abe aspirin kple NSAID (e.g., ibuprofen, diclofenac) ate ŋu axe mɔ ɖe ʋu ƒe sisi nu geɖe wu. Mègano atike aɖeke ne mèbia wò ɖɔkta o.
Gbedasi si Wotsɔ Yi Aƒeme
- Hemophilia A nye domenyiŋusẽfianu ƒe dɔléle si tso Factor VIII protein si hiã na ʋu ƒe sisi ƒe anyimanɔmanɔ gbɔ.
- Esia dzena le ŋutsuviwo gome wu, gake nyɔnuwo ate ŋu anye dɔlélea tsɔlawo.
- Dzesi vevitɔwoe nye ʋu si dona fũu akpa le abi sue aɖe gɔ̃ hã me kple abi si mehiã o.
- Ne ta xɔ abi eye dzesiwo abe taɖuame sesẽ, ʋuʋudedi, alo alɔ̃dɔdɔ ene le ŋuwò la, ke enye nusi dzɔ kpata. Di atikewɔla enumake.
- Ne wowɔ atike nyuitɔ (Factor Replacement Therapy) eye wole agbe si le dedie la, amesiwo ŋu ʋusɔgbɔdɔ le ate ŋu anɔ agbe bliboe, si me wowɔa dɔ le.
- Dzro atike siwo katã zãm nèle me kple wò ɖɔkta ɣesiaɣi hafi nàwɔ amekoko alo aɖudɔdamɔnu ɖesiaɖe.
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