Ðe wòdze abe ɖeɖi tea viwò suea ŋu ɣesiaɣi enea? Ðe melɔ̃a nuɖuɖu geɖe oa? Ðe wòde dzesii be yeƒe ŋutigbalẽ le ɣie vie wu ɖevi bubuwoa? Togbɔ be nusiawo adze abe nusiwo sɔ ene hã la, ɣeaɖewoɣi la, nɔnɔme aɖe si mebɔ o ate ŋu anɔ megbe na esia si ŋu míesea nu geɖe tsoe o. Egbea míele nu ƒom tso nɔnɔme mawo dometɔ ɖeka si mebɔ o ŋu, gake ne wokpɔ egbɔ nyuie la, àte ŋu anɔ agbe kplii dzidzedzetɔe. Emae nye Diamond-Blackfan Ʋusɔgbɔdɔ, alo `(Diamond-Blackfan Ʋusɔgbɔdɔ - DBA)`.
Kpuie ko la, nukae nye Diamond-Blackfan Anemia (DBA)?
Tsɔe be dɔwɔƒe gã aɖe le míaƒe ŋutilã me si wɔa ʋu. Míeyɔnae be ƒumeŋuɖui . Dɔwɔƒe sia ƒe dɔ vevitɔe nye be wòawɔ ʋumenugbagbevi dzĩwo, siwo nye dɔwɔla sue siwo tsɔa ɔksidzin yia míaƒe ŋutilã katã me. DBA nye nɔnɔme si me dɔwɔƒe sia si woyɔna be ƒumeŋuɖui mete ŋu wɔa ʋumenugbagbevi dzĩ siwo sɔ o. Esia mebɔ kura o, si fia be nɔnɔme sia dzɔna ɖe ɖevi siwo ade ɖeka le 500,000 ɖesiaɖe me dzi.
Esia nye domenyiŋusẽfianu ƒe dɔléle . Esia fia be domenyiŋusẽfianu siwo le míaƒe ŋutilã ƒe lãmenugbagbeviwo me ƒe tɔtrɔ gbɔe wòtso. Esia wɔnɛ be ʋumenugbagbevi dzĩwo ƒe xexlẽme dzi ɖena kpɔtɔna le ŋutilãa me. Míeyɔa nɔnɔme sia be ʋusɔgbɔdɔ , alo ʋusɔgbɔdɔ alo ʋusɔgbɔdɔ. DBA nye nɔnɔme si nɔa ame ƒe agbemeŋkekewo katã me. Gake mègatsi dzi o, ne wowɔ atike nyui na ame geɖe la, woate ŋu aɖu woƒe dzesiwo dzi ahanɔ agbe nyui .
Nukae nye ame aɖe si ŋu DBA le ƒe dzesiwo?
DBA ƒe dzesiwo ate ŋu ato vovo tso ame ɖeka gbɔ yi bubu gbɔ. Ame aɖewo ate ŋu akpɔ dzesi siwo nu mesẽ o, evɔ ame bubuwo ya ate ŋu akpɔ dzesi siwo nu sẽ wu. Mina míalé ŋku ɖe dzesi veviawo ŋu.
| Dzesi si dzena | Numeɖeɖe bɔbɔe aɖe |
|---|---|
| Ðeɖiteameŋu enuenu | Esi ŋutilã ƒe lãmenugbagbeviwo mexɔa oxygen agbɔsɔsɔme si hiã o ta la, zi geɖe la, alɔ̃ le wuwòm eye ŋusẽ meganɔa ŋuwò be nàwɔ naneke o. |
| Ŋutilã ƒe blɔ (Pallor) . | Ŋutilã, nuyiwo, kple ɖawo dzena ɣie le ʋumenugbagbevi dzĩwo ƒe anyimanɔmanɔ ta, eye ʋumenugbagbevi dzĩwo nana ʋua ƒe amadede biã. |
| Dzi ƒe tsotso kabakaba (Tachycardia) . | Ele be dzia nawɔ dɔ sesĩe wu be wòakɔ ʋua kabakaba eye wòana ɔksidzin si ŋutilãa hiã. |
| Yagbɔgbɔ sesẽ | Ɣeaɖewoɣi abe ne mele azɔli zɔm kpuie alo le atrakpui aɖe liam ene la, gbɔgbɔ sesẽna nam, eye mesena le ɖokuinye me abe ɖe mele gbɔgbɔm ene. |
| Nudzroame | Vevietɔ ɖevi sue siwo metsɔa ɖeke le nuɖuɖu me boo o. |
| Taɖuame kple gbɔdzɔgbɔdzɔ | Nɔnɔme si bɔ si tsoa oxygen si mesɔ gbɔ ɖe ŋutilã kple ahɔhɔ̃ me o gbɔ. |
Nukatae dɔléle sia ƒomevi dzɔna? Nuka gbɔe wòtso?
Abe alesi míedzro eme va yi ene la, domenyiŋusẽfianu ƒe dɔlélee nye esia. Domenyiŋusẽfianu tɔxɛ aɖewo le míaƒe ŋutilã me siwo fiaa mɔ mí be míawɔ ʋumenugbagbevi dzĩwo. Woyɔa wo be `(ribosomal protein genes)`. domenyiŋusẽfianu siawo ƒe tɔtrɔ alo tɔtrɔ aɖe le amesi ŋu DBA le ŋu. Esia wɔe be ʋumenugbagbevi dzĩwo wɔwɔ ƒe ɖoɖoa medzɔna nyuie o.
Nu vevitɔe nye be woate ŋu atso dzilawo gbɔ ayi ɖeviwo gbɔ. Gake esia dzɔna le alafa memamã sue aɖe ko me, abe 10% - 25% ene. Le go geɖe me la, ɖevi ate ŋu axɔ nɔnɔmea ne dɔlélea mele ƒomea me o gɔ̃ hã, le domenyiŋusẽfianu ƒe tɔtrɔ si dzɔ le vome ta.
Kuxi bubu kawoe ate ŋu ado mo ɖa le DBA ta?
Menye ʋumenugbagbevi dzĩwo koe DBA gblẽa nu le o. Ɣeaɖewoɣi la, ate ŋu ahe lãmesẽkuxi bubuwo hã vɛ. Azɔ hã, amesiwo ŋu DBA le ate ŋu axɔ kansa ƒomevi aɖewo vie wu amehawo katã.
| Kuxi ƒomevi aɖe | Nuɖᴐɖᴐ |
|---|---|
| Kuxi siwo bɔ | |
| Vidzidzi ƒe gbɔdzɔgbɔdzɔwo | Kuxi aɖewo ate ŋu anɔ dzi, ayiku, alo abɔ kple afɔwo ŋu. |
| Tsitsi ƒe ʋuʋu | Ŋutilã me tsitsi nɔa blewu wu alesi wokpɔ mɔe le ƒexɔxɔ gome. |
| Gayibɔ ƒe agba si gbɔ eme | Ʋudodo enuenu ate ŋu ana iron ƒe agbɔsɔsɔ si le ŋutilãa me nadzi ɖe edzi madzemadzee, si agblẽ nu le ŋutinuwo abe dzi kple aklã ene ŋu. |
| Ʋumenugbagbevi bubuwo dzi ɖeɖe kpɔtɔ | Ɣeaɖewoɣi la, ʋumenugbagbevi bubuwo, abe ʋumenugbagbevi ɣiwo (neutropenia) alo ʋumenugbagbevi dzĩwo (thrombocytopenia) hã ate ŋu anɔ ʋɛ. |
| Kansa ƒe afɔku (si lolo vie) . | |
| Ʋumenugbagbeviɣidɔ | Vevietɔ ʋumenugbagbeviɣidɔ ƒomevi aɖe si woyɔna be ``Acute myeloid leukemia - AML``. |
| Lãmetsiŋusẽ ƒe dɔléle (MDS) . | Ʋumedɔ bubu si gblẽa ƒumeŋuɖui ƒe dɔwɔwɔ me. |
| Osteosarcoma ƒe dɔléle | Kansa ƒe nɔnɔme si dzɔna le ƒuwo me. |
Aleke ɖɔktawo wɔa anya dɔléle sia pɛpɛpɛ?
Ne dzesi siawo le viwòa ŋu la, ɖɔkta ado viwòa kpɔ nyuie gbã eye wòabia nya wò tso eŋu tsitotsito. Emegbe, woate ŋu awɔ dodokpɔ aɖewo atsɔ aɖo kpe dɔlélea dzi.
- Ʋu Xexlẽme Blibo (CBC): Esia dzidzea ʋumenugbagbevi dzĩwo, ʋumenugbagbevi ɣiwo, kple ʋumenugbagbevi dzĩwo ƒe xexlẽme le ʋua me. Ame si ŋu DBA le la ƒe ʋumenugbagbevi dzĩwo ƒe xexlẽme ɖiɖi ŋutɔ.
- Reticulocyte ƒe xexlẽme: Reticulocytes nye ʋumenugbagbevi dzĩ siwo wowɔ yeyee siwo metsi bliboe haɖe o. Xexlẽme si le sue fia be ƒumeŋuɖui mele ʋumenugbagbevi dzĩ yeyewo wɔm wòde edeƒe o.
- Ƒumeŋuɖui ƒe ʋuʋu kple lãmenugbagbeviwo ɖeɖe: Esiae nye dodokpɔ vevitɔ si wozãna tsɔ ɖoa kpe dɔlélea dzi. Le esia me la, woɖea ƒumeŋuɖui sue aɖe ŋutɔ, zi geɖe la, woɖea akɔtaƒu me, le atike si naa alɔ̃dɔdɔ ame me. Emegbe woléa ŋku ɖe eŋu le nusuekpɔmɔ̃ me be woakpɔ alesi tututu ʋumenugbagbevi dzĩwo le wɔwɔm.
Nukawoe nye atike siwo wozãna na DBA?
Togbɔ be womate ŋu ada DBA keŋkeŋ o hã la, atikewɔmɔnu nyui aɖewo li siwo ate ŋu akpe ɖe ame ŋu wòaɖu dzesiawo dzi eye wòalé agbenɔnɔ nyui me ɖe asi.
1. Corticosteroids: Atike siawo ʋãa ƒumeŋuɖui be wòawɔ ʋumenugbagbevi dzĩ geɖe. Dɔdamɔnu sia kpɔa dzidzedze na dɔnɔ geɖe.
2. Ʋudodo: Wotsɔa ʋumenugbagbevi dzĩwo naa ame siwo ƒe ʋu ƒe xexlẽme le sue ŋutɔ tso ame si le lãmesẽ me gbɔ. Ðɔktawo ate ŋu adze atikewɔwɔ sia gɔme ne wonya kpɔ dɔlélea ko. Esia naa gbɔdzɔe kabakaba tso dzesiawo me.
3. Lãmenugbagbeviwo dodo na ame: Esia koe nye atike si ate ŋu ada DBA keŋkeŋ . Gake esia nye atikewɔwɔ si sesẽ ŋutɔ eye afɔku le eme. Le esia me la, wodoa lãmenugbagbevi siwo tso ame si le lãmesẽ me (zi geɖe la, enye ƒomea me tɔ) ƒe ƒumeŋuɖui me ɖe dɔnɔa me. Esia manya wɔ na amesiame o. Ðɔktaa srɔ̃a nu tso dɔnɔa ƒe nɔnɔmea ŋu nyuie, ekpɔa amesi sɔ nyuie wu, eye wòwɔa nyametsotso sia le ŋugbledede geɖe megbe.
Nukae woawɔ ne nɔnɔme kpata aɖe dzɔ?
Ne DBA le ŋuwò alo viwòa ŋu la, ele vevie ŋutɔ be nànɔ kadodo me kple wò ɖɔkta. Ele vevie be nàwɔ ɣeyiɣi siwo woɖo ɖi na wò eye nàno wò atikewo abe alesi wogblɔe ene. Ne wò dzesiwo gagblẽ ɖe edzi (le kpɔɖeŋu me, ɖeɖi te ŋuwò wu alesi nèwɔnɛ ɖaa, dɔlékui geɖe va le ŋuwò) la, gblɔe na wò ɖɔkta enumake.
Azɔ hã, ne èkpɔ dzesi kpata siwo gbɔna la dometɔ aɖe la, yi kɔdzi ƒe Dɔwɔƒe si Kpɔa Nudzɔdzɔ Kpatawo Gbɔ (ETU) si te ɖe ŋuwò enumake .
- Akɔtave sesẽ
- Dɔgbo ƒe vevesese sesẽ kpata
- Taɖuame sesẽ kpata, tɔtɔ, alo nuƒoƒo sesẽ (esiawo ate ŋu anye ʋusɔgbɔdɔ ƒe dzesiwo) .
- Ʋu si dona le ame ŋu si dzi womate ŋu aɖu o
Agbenɔnɔ kple nɔnɔme si mebɔ o abe DBA ene le agbe me katã, vevietɔ ne viwòe, ate ŋu asesẽ ŋutɔ. Ate ŋu ase le eɖokui me be yetsi akogo. Gake ɖo ŋku edzi be menye wò ɖeka koe o. Wò ɖɔkta kple atikewɔlawo ƒe ƒuƒoƒoa ana kpekpeɖeŋu kple mɔfiame si nèhiã la wò.
Gbedasi si Wotsɔ Yi Aƒeme
- Diamond-Blackfan anemia (DBA) nye domenyiŋusẽfianu ƒe dɔléle si mebɔ o si xea mɔ na ƒumeŋuɖui be wòagawɔ ʋumenugbagbevi dzĩ siwo sɔ o.
- Ðeɖiteameŋu enuenu, ŋutigbalẽ biã, kple gbɔgbɔtsixe tsia ame ƒoe nye dzesi vevitɔwo.
- Togbɔ be nɔnɔme sia nye agbemeŋkekewo katã ƒe dɔléle hã la, woate ŋu akpɔ egbɔ dzidzedzetɔe to atikewɔwɔwo abe steroid-tikewo kple ʋudodo ene me.
- Ele vevie be nànɔ kadodo me kple wò ɖɔkta edziedzi eye nàxɔ dodokpɔ kple atikewɔwɔ si sɔ.
- Nya nu tso nuxlɔ̃amedzesiwo ŋu kpata (abe akɔtave sesẽ, susu ƒe dɔwɔwɔ ene) eye nàyi kɔdzi ƒe Atikewɔwɔ Kpata (ETU) enumake ne nɔnɔme sia tɔgbe dzɔ.
- Ne èse le ɖokuiwò me be yeɖe ye ɖokui ɖe aga le esi esia nye dɔléle si mebɔ o ta gɔ̃ hã la, ɖo ŋku edzi be atikewɔlawo ƒe ƒuƒoƒowo kple kpekpeɖeŋunahabɔbɔwo li siwo akpe ɖe ŋuwò.
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