Akɔta ƒe ʋuʋu enuenu, lolo ƒe anyimanɔmanɔ... Cystic Fibrosis (CF) ye nye esia? Mina míanɔ ŋudzɔ ɖe esia ŋu.

Ðe viwò suea ƒe ŋɔti tsia ɣesiaɣia? Nuɖuɖu agbɔsɔsɔme ka kee woɖana o, wova nɔa ƒuƒlu evɔ womenya gɔ̃ hã oa? Ðe wòwɔna na wo ɣeaɖewoɣi abe ɖe gbɔgbɔ sesẽna na wo enea? Esɔ be dzilawo navɔ̃ ne wokpɔ dzesi siawo. Esiawo ate ŋu anye dɔléle aɖe si woyɔna be Cystic Fibrosis (CF) ƒe dzesiwo, si ɖewohĩ míese nu geɖe tso eŋu o, gake ele vevie ŋutɔ be míanya. Mina míaƒo nu tso esia ŋu vɔvɔ̃manɔmee eye egbea ko.

Nuka tututue nye cystic fibrosis (CF)?

Kpuie ko la, esia nye domenyiŋusẽfianu ƒe dɔléle si ƒe dome wonyi tso dzilawo gbɔ . Domenyiŋusẽfianu tɔxɛ aɖe li si kpɔa dze (chloride) kple tsi ƒe zɔzɔ to míaƒe ŋutilã ƒe lãmenugbagbeviwo me dzi. Woyɔa esia be CFTR (cystic fibrosis transmembrane conductance regulator) domenyiŋusẽfianu . Eyata CF dɔléle dzɔna ne domenyiŋusẽfianu sia ƒe nɔnɔme gblẽ alo tɔtrɔ aɖe le eŋu.

Nukae dzɔna le nɔnɔme madeamedzi sia ta? Zi geɖe la, nusiwo dona le míaƒe ŋutilã me, abe ʋuʋudedi kple ʋuʋudedi ene, nɔa tsɛ eye woglina. Gake le amesi ŋu CF le ƒe ŋutilã me la, tsi siawo va ƒoa ke ɖe to ŋutɔ, woƒona, eye woléna ɖe nu ŋu .

Bu nusi dzɔna ne ʋuʋudedi ɣi sia ƒo ƒu ɖe lãkusiwo me ŋu kpɔ. Enaa gbɔgbɔ sesẽna, dɔlékuiwo xana bɔbɔe , eye dɔlékuiwo va nɔa ame ŋu zi geɖe wu . Le ɣeyiɣi aɖe megbe la, esia ate ŋu agblẽ nu le lãkusiwo ŋu vevie, gbɔgbɔtsixe tsia ƒo, eye wòaku gɔ̃ hã.

Azɔ hã, tsi ʋeʋĩ siawo xea mɔ na dɔgboa ƒe mɔ̃wo. Emegbe nuɖuɖumeŋusẽ siwo kpena ɖe mía ŋu míeɖua nuɖuɖu si míeɖuna la medona o . Esia wɔnɛ be nunyuimakpɔɖu kple tsitsi ƒe tsitsi dzi ɖena kpɔtɔna. Gakpe ɖe eŋu la, aklãdɔ, suklidɔ (`Cystic Fibrosis-Related Diabetes` - CFRD) kple vidzidzi ƒe kuxiwo hã ateŋu adzɔ.

Gake mègatsi dzi o. Egbea la, le atikewɔwɔ deŋgɔwo ta la, CF dɔnɔwo ƒe agbenɔƒe dzi ɖe edzi ƒe bla nanewo.

Nukae nye dɔléle sia ƒe dzesiwo?

CF ƒe dzesiwo ate ŋu ato vovo tso ame ɖeka gbɔ yi bubu gbɔ. Wotoa vovo hã le alesi dɔlélea nu sẽe nu. Mina míalé ŋku ɖe dzesi veviawo ŋu.

Cystic fibrosis si mebɔ o

Esia nye CF ƒe ƒomevi si fa wu. Dzesiawo dzena le eƒe tsitsime. Ɣeaɖewoɣi la, ŋutinu ɖeka koe wògblẽa nu le.

Nukae hea CF vɛ?

Abe alesi míedzro eme va yi ene la, domenyiŋusẽfianu si woyɔna be CFTR ƒe gbɔdzɔgbɔdzɔ aɖe gbɔe esia tsona. Hafi ɖevi naxɔ dɔléle sia la, ele be ɖevia naxɔ domenyiŋusẽfianu si gblẽ la ƒe kɔpi tso dadaa kple fofoa siaa gbɔ .

Aleke wokpɔa dɔlélea dzea sii?

Ele vevie ŋutɔ be woakpɔ dɔléle sia kaba, elabena ekema woate ŋu adze atikewɔwɔ gɔme kaba eye woate ŋu aɖe kuxi siwo ate ŋu ado mo ɖa le etsɔme dzi akpɔtɔ. Le Sri Lanka la, kɔdzi aɖewo le ɖeviwo dom kpɔ be esia le wo dziɣi hã.

Dodokpɔ vevi siwo wozãna tsɔ dea dzesi dɔléleae nye:

• Fifia dodokpɔ: Esiae nye dodokpɔ si ŋu kakaɖedzi le wu be woatsɔ anya CF.Dodokpɔ sia si me vevesese mele o la dzidzea dze (chloride) agbɔsɔsɔme si le wò fifia me. Ne agbɔsɔsɔa sɔ gbɔ sã wu alesi wòle dzɔdzɔmee la, ke enye CF ƒe dzesi.
• Ʋudodokpɔ: Esia doa atike aɖe si woyɔna be `Immunoreactive Trypsinogen (IRT)` ƒe agbɔsɔsɔ le ʋua me kpɔna. Agbɔsɔsɔ sia sɔ gbɔ ɖe CF dɔnɔwo me.
• Domenyiŋusẽfianu dodokpɔ (DNA dodokpɔ): Esia léa ŋku ɖe nusiwo gblẽ le `CFTR` domenyiŋusẽfianu ŋu tẽ.

Tsɔ kpe ɖe dodokpɔ siawo ŋu la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò be nàwɔ dodokpɔ bubuwo atsɔ aɖo kpe dɔlélea dzi ahadi kuxi siwo ado tso eme. Le kpɔɖeŋu me, akɔta ƒe X-ray, aklã ƒe dɔwɔwɔ dodokpɔ (PFTs), kple aɖuɖɔ kple aɖuɖɔ dodokpɔ.

Nukawoe nye atikewɔmɔnuawo?

Esi wònye be CF nye dɔléle sesẽ aɖe ta la, eŋutinunyala bibiwo ƒe ƒuƒoƒo si me tɔwo wɔa dɔ vovovowo, siwo dometɔ aɖewoe nye aklãŋutinunyala, lãmesẽdɔwɔla, kple nuɖuɖuŋutinunyalae naa edada. Taɖodzinu vevi siwo le atikewɔwɔ ŋue nye be woaɖe ʋuʋudedi ɖa le lãkusiwo me, woaxe mɔ ɖe dɔlékuiwo xɔxɔ nu, eye woana nunyiame si hiã.

Atikewo

Wò ɖɔkta ate ŋu aŋlɔ atikewo abe:

• Dɔlékuiwutikewo: Xɔ mɔ ɖe aɖuɖɔtoedɔlékuiwo nu eye nàda wo.
• Atike siwo nana ʋuʋudedi le lãme na ame: Wotoa atike si wotsɔna gbɔa ya alo nusi wotsɔna tsia lãme na ame dzi naa esiawo. Wokpena ɖe ame ŋu be ʋuʋudedi si le ʋeʋẽm la naɖiɖi eye wònana wònɔa bɔbɔe be ame nakɔ.
• Aɖuɖɔtoewo kekena: Wokekea yaƒoƒomɔ̃wo ɖe enu eye wònana gbɔgbɔ nɔa bɔbɔe.
• Dɔgbo ƒe enzyme kpeɖeŋutɔ: Ele be woano esiawo kple nuɖuɖu kple numeɖenu ɖesiaɖe. Wokpena ɖe ame ŋu le nuɖuɖumeŋusẽ kple nunyiamewo xɔxɔ me.
• CFTR modulators: Esiawoe nye atike yeyetɔ kekeake siwo wɔa dɔ wu. Atike siawo kpena ɖe ame ŋu be `CFTR` protein si gblẽ si hea dɔlélea vɛ tẽ la ƒe dɔwɔwɔ ake. Esia ate ŋu ana ʋuʋudedi naɖiɖi, ana lãkusi nawɔ dɔ nyuie wu, aɖe kɔdzidɔ dzi akpɔtɔ, eye wòaɖe lolo gɔ̃ hã dzi akpɔtɔ. `(Trikafta, Kalydeco, Orkambi)` nye atike siawo ƒomevi aɖewo.

Yameʋuɖoɖo Ŋuti Mɔnuwo (ACT) .

Esiawo nye nusiwo wòle be woawɔ gbesiagbe, zi eve ya teti gbesiagbe. Wokpena ɖe ame ŋu wòɖea ʋuʋudedi si le lãkusia me la ɖa heɖenɛ ɖa.

• Akɔta ƒe kamedede: Na ame aɖe naƒo akɔta kple akɔta le ɣeyiɣi ƒe didime nu be ʋuʋudedi naɖe ɖa.
• Vest la: Esia nye vest si wotsɔ do ka kple mɔ̃ tɔxɛ aɖe. Ne wodoe la, ʋuʋudedi siwo nu sẽ ŋutɔ ƒoa akɔta, si wɔnɛ be nuwɔna aɖe dzɔna eye wòɖea ʋuʋudedi.
• PEP mɔ̃wo: Yagbɔgbɔ to mɔ̃ suewo abe `(Flutter, Acapella)` dzi hea nyaƒoɖeamenu vɛ le lãkusiwo me eye wòkpena ɖe ame ŋu wòɖea ʋuʋudedi ɖa.

Amekokowo

Kuxi aɖewo ate ŋu abia be woawɔ dɔ na wo.

• Aklã dodo: Mɔnu mamlɛtɔ ne dɔlélea nu sẽ ŋutɔ eye lãkusiwo megawɔa dɔ kura o kloe.
• Aklã dodo: Ne aklãa gblẽ vevie.
• Bubuwo: Nuwo abe no me ʋukawo ɖeɖeɖa, nuɖuɖu ƒe mɔ̃ dede dɔgboa me be wòana nuɖuɖu ene.

Kuxi siwo ate ŋu ado tso CF me

Ne womeda CF nyuie o la, kuxi vovovowo ate ŋu ado mo ɖa.

• Aklã: Yaƒoƒomɔ̃wo kekena tegbee (`Bronchiectasis`), aklã ƒe gbagbã (`Pneumothorax`), dɔlékui siwo nɔa anyi didi.
• Dɔdzẽ: Suklidɔ si do ƒome kple CF (`CFRD`).
• Aklã: Aklã ƒe abi (`Cirrhosis`).
• Dɔgbo: Dɔgbo ƒe xexe, dɔgbo me dɔdzẽ ƒe afɔku si dzina ɖe edzi.
• Vidzidzi ƒe ɖoɖo: Ŋutsuwo ƒe vidzidzi kple vidzidzi megbetsitsi le nyɔnuwo me.
• Ƒuwo: Ƒuwo ƒe ƒuƒu (Osteoporosis).

Nya Siwo Wobiaa Ame Enuenu (FAQs) .