Ènya ayikudɔ sia si mebɔ oa? (Ʋu si me ʋu sina toa ʋumenugbagbeviɣidɔ si mebɔ o - aHUS)

Nukae adzɔ ne ʋuka siwo le ʋuka suesuesue siwo le wò ayiku me la me, si xe mɔ na ʋu ƒe sisi yi wò ayiku me? Edzi ŋɔ be woabu eŋu, alo? Nu ma tututu ŋue míele nu ƒom tsoe egbea. Woyɔa esia be Atypical Hemolytic Uremic Syndrome, alo aHUS kpuie. Togbɔ be womate ŋu adae o hã la, woate ŋu akpɔ egbɔ nyuie ne wozã atike nyuitɔ . Eyata mina míasrɔ̃ nu geɖe tso eŋu.

Vovototo kae le Atypical kple Typical HUS dome?

Ðewohĩ èse nɔnɔme aɖe si woyɔna be HUS ŋu nya kpɔ. Míeyɔe be "HUS si bɔ." Zi geɖe la, dɔlékui aɖe abe E. coli ene, si hea aɖuɖɔtoe vɛ gbɔe wòtsona. Gake nɔnɔme si ŋu míele nu ƒom tsoe egbea, aHUS, to vovo.

Nɔnɔme sia si woyɔna be aHUS ate ŋu adzɔ le ƒe ɖesiaɖe me. Le ɖevi suewo gome la, egblẽa nu le ŋutsuviwo kple nyɔnuviwo siaa ŋu sɔsɔe. Gake ne nyɔnuwo le tsitsim la, ate ŋu axɔ dɔlélea bɔbɔe. Esia le alea elabena fufɔfɔ ate ŋu anye nu vevi aɖe si ahe dɔlélea vɛ. Ebɔ ale gbegbe be numekuku aɖewo ɖee fia be ame eve le miliɔn ɖeka me koe dɔlélea le.

Nukatae aHUS va dona?

Kpuie ko la, domenyiŋusẽfianu ƒe tɔtrɔ, alo domenyiŋusẽfianu ƒe tɔtrɔ, le ame geɖe siwo xɔ aHUS la ƒe ŋutilã me. Bu eŋu abe ‘button’ aɖe le wò ŋutilã me si ate ŋu ahe dɔléle sia vɛ ene. Gake ne èʋu abɔta ma ko la, mehea dɔlélea vɛ le eɖokui si o. Ehiã na nane si le egodo be ‘woaʋu’, alo awɔ dɔ. Míeyɔa esiawo be ‘nu siwo ʋãa ame’.

Nu vevi siwo aʋãe ate ŋu anye:

• Fufɔfɔ
• Dɔlékui ƒe nɔnɔme aɖewo
• Kansa
• Atike aɖewo
• Lãmenugbagbeviwo dodo na ame
• Atikewɔwɔ me dɔléle aɖewo siwo nɔa anyi didi (abe systemic sclerosis alo malignant hypertension) .

Nukawoe nye dzesiawo?

Zi geɖe la, aHUS ƒe dzesiwo dzena kpata ne nusi gbɔ wòtso la dzɔ vɔ. Dzoxɔxɔ ate ŋu anɔ bɔbɔe alo nu sesẽ. Le nɔnɔme siwo mesẽ o me la, ɖewohĩ ayikuawo magblẽ nu boo o, gake le nɔnɔme sesẽwo me la, woate ŋu ana ayiku nawɔ dɔ nyuie o .

Dzesi siwo nàte ŋu akpɔ le eƒe gɔmedzedze:

• Ŋutilã ƒe vevesese kple ɖeɖiteameŋu si gbɔ eme
• Sese le eɖokui me be yeƒe lãme mesẽ o le goawo katã me

Esia nye dɔléle si le ŋgɔ yim. Esia fia be dzesiawo nu sẽna ɖe edzi le ɣeyiɣi aɖe megbe, vevietɔ ne womekpɔe kaba o. aHUS gblẽa nu le wò ayiku ŋu koŋ. Gake ʋukawo ƒe xexe ate ŋu agblẽ nu le ŋutinu bubuwo abe ahɔhɔ̃, aklã, lãkusi, kple dzi ene hã ŋu.

Aleke woawɔ anya dɔlélea?

Ne ame aɖeke mexɔ dɔlélea le wò ƒomea me kpɔ o la, ate ŋu asesẽ vie be woakpɔ aHUS. Zi geɖe la, ayikuŋutinunyala alo ʋumenugbagbeviɣidɔdalae nyea ame nyuitɔ kekeake si anya nu tso esia ŋu. Woalé ŋku ɖe nusiwo míeyɔ le kplɔ̃ si le etame dzi etɔxɛe eye woaɖo wò ɖe dodokpɔ siwo hiã la wɔwɔ me.

Nukawoe nye atikewɔmɔnu siwo woate ŋu azã?

Dzɔgbenyuietɔe la, atike eve li siwo dzi woda asi ɖo na aHUS.

• `Eculizumab (Soliris) ƒe atikekuiwo`
• `Ravulizumab-cwcz (Ultomiris) ƒe lãmesẽnyawo gbɔ kpɔkpɔ`

Esiawo evea siaa le atikewo ƒe hatsotso aɖe si woyɔna be `monoclonal antibodies.` Kpuie ko la, esiawo nye protein siwo wowɔ kple asi siwo wɔa dɔ abe míaƒe ŋutilã ƒe dzɔdzɔme dɔlékuiwutikewo ene. Wokpɔa ŋusẽ ɖe ŋutilãa ƒe dɔlélenutsiŋutete ƒe akpa aɖe dzi eye wodzudzɔa ʋu ƒe sisi.

Atike aɖe si woyɔna be ``Eculizumab`` ateŋu adzi ʋumenugbagbevi dzĩwo kple ʋumenugbagbevi dzĩwo ƒe xexlẽme ɖe edzi le wò ʋu me. Ne wodze atikewɔwɔ gɔme kaba , atike sia ate ŋu atrɔ nusiwo gblẽ le ayikuawo ŋu dometɔ aɖewo gɔ̃ hã.

Wodoa atike siawo evea siaa to atikewo dodo me. Woate ŋu ahe nugbegblẽ suesuesuewo, abe taɖuame, dzesi siwo ɖi dzamezã, dɔgbo ƒe veve, kple ŋutilã ƒe veve ene vɛ. Vevietɔ wu la, afɔku li be woaxɔ dɔlékui sesẽwo, abe taɖuame (meningococcal disease) ene ne wole atike siawo zãm. Eyata wò ɖɔkta agblɔ na wò be nàdo atike na ema, eye ate ŋu ana dɔlékuiwutikewo hã wò be nàxe mɔ ɖe dɔlélea nu.

Tsɔ kpe ɖe atike siawo ŋu la, woate ŋu azã ʋumenugbagbeviɣidɔ hã. Esia bia be woana dɔnɔa ƒe ʋumenugbagbevi dzĩ (ʋua ƒe akpa si nye tsi) si woɖe tso ame si le lãmesẽ me (ʋumenugbagbeviɣidɔ) alo woaɖe dɔnɔa ƒe ʋumenugbagbeviɣia ɖa eye woatsɔ ʋumenugbagbeviɣi si le lãmesẽ me aɖo eteƒe (ʋumenugbagbeviɣi ƒe asitɔtrɔ).

Ne ayikuawo mewɔa nu ɖe ​​atike siawo dometɔ aɖeke ŋu o la, tiatia mamlɛtɔe nye ayiku me ʋusisi alo ayiku dodo na ame .

Kuxi siwo ate ŋu ado mo ɖa kple nɔnɔme kpatawo

Tsɔ kpe ɖe ayiku ƒe dɔmawɔmawɔ nyuie ŋu la, aHUS ate ŋu ahe kuxi bubuwo vɛ.

Agbenɔnɔ kple dɔléle sia kple susu ƒe lãmesẽ

Enye nusi sɔ be nàlé blanui ahatsi dzimaɖi ne èle agbe kple dɔléle si nɔa anyi didi abe esia ene. Menye wò vodadae o. Esia tae wòle vevie be nàlé be na wò susu ƒe lãmesẽ kpakple wò ŋutilã ƒe lãmesẽ hã .

• Bia wò atikewɔlawo ƒe ƒuƒoƒoa be woakpe ɖe ŋuwò: Ðɔktawo, dɔnɔdzikpɔlawo, kple hadomekpekpeɖeŋudɔwɔlawo ate ŋu afia mɔ wò ayi teƒe siwo nàte ŋu akpɔ susuŋutinunya ƒe kpekpeɖeŋu si nèhiã le.
• Kpɔ aɖaŋuɖola aɖe ɖa: Nuƒoƒo kple aɖaŋuɖola si si mɔɖegbalẽ le ate ŋu akpe ɖe ŋuwò nàɖe wò agba dzi akpɔtɔ eye nàtu susu ƒe ŋusẽ si nèhiã be nànɔ te ɖe nɔnɔme sia nu ɖo.
• Lé be na ɖokuiwò: Dɔ alɔ̃ nyuie. Di mɔ siwo dzi nàto aɖe nuteɖeamedzi dzi akpɔtɔ. Ƒo nuɖuɖu si sɔ na ayiku. De kame alesi nàte ŋui. Nu siawo ate ŋu akpɔ ŋusẽ gã aɖe ɖe wò nyonyo bliboa dzi.
• Ƒo nu kple wò lɔlɔ̃tɔwo: Nuƒoƒo tso nya sia ŋu na wò ƒometɔwo kple xɔlɔ̃wo ana gbɔdzɔe geɖe wò.