Mmofra binom, titiriw wɔn a wɔwɔ yare bi a ɛntaa nsi a wɔfrɛ no Alagille syndrome no betumi anya honam ani yaw a wontumi nnyina ano. Nsɛmfua biara nni hɔ a wɔde bɛkyerɛkyerɛ ɔhaw a wohyia no mu. Enti, aduru titiriw biako a nnuruyɛfo kyerɛw ma wɔ tebea horow a ɛtete saa mu ne Maralixibat a wɔtaa tɔn wɔ din Livmarli ase no. Sɛ wɔakyerɛw saa aduru yi ama wo anaa wo ba a, ebia wubenya nsɛm pii a ɛhaw wo ne nsɛmmisa pii wɔ ho. Momma yɛnka eyinom nyinaa ho asɛm tiawa ne ayamye mu nnɛ.
Sɛ yɛbɛka no tiawa a, dɛn na ɛba wɔ Maralixibat aduru yi ho?
Okay, ebia aduruyɛ mu din a wɔde frɛ eyi no bɛyɛ te sɛ nea ɛyɛ den kakra. Maralixibat yɛ aduru bi a ɛka nnuru bi a wɔfrɛ no ileal bile acid transporter (IBAT) inhibitors ho. Afei, mma w’adwene nkɔ wo so, mɛkyerɛkyerɛ mu tiawa.
Fa no sɛ, biribi a wɔfrɛ no bile acid wɔ bile a mmerɛbo no yɛ wɔ yɛn nipadua mu no mu. Wɔ Alagille syndrome mu no, saa bile acid ahorow yi mfi nipadua no mu yiye na ɛboaboa ano wɔ mogya no mu mmom. Sɛ bile acid dodow a ɛwɔ mogya no mu kɔ soro a, honam ani yaw kɛse.
Enti nea Maralixibat aduru yi yɛ ne sɛ ɛhwɛ sɛnea saa bile acid ahorow yi san kɔ nipadua no mu fi dwensɔtwaa no mu. Sɛ yɛbɛka no pɛpɛɛpɛ a, esiw saa adeyɛ no kwan. Afei bile acid dodow a ɛwɔ mogya no mu no so tew, na nkakrankakra wodi saa honam ani yaw a ɛyɛ yaw no nso so. So wote ase?
Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woafi ase anom nnuru
Ɛho hia yiye sɛ wo duruyɛfo hu w’akwahosan tebea koraa ansa na wakyerɛw saa aduru yi ama wo. Enti, sɛ wowɔ tebea horow a edidi so yi mu biara a, hwɛ hu sɛ wobɛka akyerɛ wo duruyɛfo.
- Sɛ wɔadi kan ahu sɛ vitamin A, D, E, anaa K sua wɔ wo mogya mu a.
- Sɛ woanyinsɛn, anaasɛ wowɔ anidaso sɛ wobɛnyinsɛn daakye a enni akyiri a.
- Sɛ woyɛ ɛna a worema abofra nufu a.
Oduruyɛfo no begyina saa nsɛm yi so akyerɛ ayaresa nhyehyɛe a ɛfata wo sen biara.
Ɔkwan bɛn so ankasa na mede saa aduru yi di dwuma?
Eyi yɛ ano aduru a wɔde ano ka. Sɛnea ɛbɛyɛ na woanya aduru no so mfaso kɛse no, ɛho hia sɛ wode di dwuma yiye.
- Bere: Ɛsɛ sɛ wɔnom eyi bere koro mu da biara, simma 30 ansa na wɔadi aduan a edi kan wɔ da no mu.
- Susuw: Fa syringe soronko a wɔde ano nom, nsenia, anaa dropper a ɛka aduru yi ho no nkutoo di dwuma fa susuw. Mfa teaspoon anaa soup spoons a wɔde di dwuma daa nni dwuma wɔ fie esiane biribiara nti, efisɛ ɛrensusuw dodow pɔtee a wɔde ma no.
- Sɛ wode nnuru afoforo di dwuma: Sɛ worenom nnuru afoforo (bile acid binding resins) te sɛ cholestyramine anaa colesevelam a, anyɛ yiye koraa no, ɛsɛ sɛ nnɔnhwerew 4 na ɛda wɔn ne Maralixibat aduru yi ntam.Ɛsɛ sɛ wode sie. Ɛno kyerɛ sɛ ɛsɛ sɛ wonom aduru foforo no nnɔnhwerew 4 wɔ Maralixibat a woanom akyi anaasɛ nnɔnhwerew 4 ansa na woanom. Wo ne wo duruyɛfo nka eyi ho asɛm na ma emu nna hɔ bio.
- Akwankyerɛ a Wɔde Di Dwuma: Kenkan AKWANKYERƐ A ƐFA AKWANKYERƐ HO a ɛka aduru no ho no yiye. Sɛ biribi wɔ hɔ a wonte ase a, bisa wo duruyɛfo.
Wobetumi akyerɛw saa aduru yi ama mmofra a wɔadi mfe biako pɛ wɔ tebea horow bi a wɔapaw ho. Nanso, ɛsɛ sɛ wodi ahwɛyiye soronko bi akyi. Enti, sɛ wode saa aduru yi rema abofra a, di oduruyɛfo no akwankyerɛ akyi pɛpɛɛpɛ.
Na sɛ mepa nnuru dodow bi nso ɛ?
Esiane sɛ asetra mu adagyew nni hɔ nti, ebetumi aba sɛ wo werɛ befi sɛ wobɛnom nnuru dodow bi. Sɛ ɛba saa a, fa no bere a woakae ara pɛ. Nanso, sɛ ɛka akyi bɛboro nnɔnhwerew 12 fi bere a wotaa nom no a, twa dodow a woayera no so. Fa dodow a edi hɔ no wɔ bere a wɔahyɛ da ayɛ no mu. Mfa nnuru abien prɛko pɛ da mfa nsiesie dodow a woayera no.
Sɛ wonom nnuru pii a, dɛn na woyɛ?
Sɛ wususuw sɛ woanom nnuru pii a, mma wo ho nnyɛ wo hu na kɔ ayaresabea Emergency Treatment Unit (ETU) a ɛbɛn wo no ntɛm ara . Anaasɛ frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea hɔ no na woanya afotu.
Nneɛma bɔne a ebetumi afi mu aba bere a wɔrenom aduru no
Sɛnea ɛte wɔ nnuru biara ho no, nsunsuanso bɔne bi wɔ hɔ a ebetumi afi mu aba bere a worenom Maralixibat no. Eyinom bi betumi ayɛ aniberesɛm, enti ɛho hia sɛ wohu.
| Nsunsuanso bɔne | Mpopoeɛ |
|---|---|
| Nneɛma bɔne a anibere wom a ɛsɛ sɛ wobɔ wo duruyɛfo amanneɛ ntɛm ara | |
| Nneɛma a ɛma obi ho yɛ no hyew a emu yɛ den | Wora mu akisikuru, akisikuru, akisikuru; anim, ano anaa tɛkrɛma a ɛho ahonhon. |
| Mmɛn a wɔapirapira | Aniwa anaa honam ani a ɛyɛ kɔkɔɔ; nsu a ɛyɛ kɔkɔɔ anaa bruu tuntum; ɛyaw a ɛba yafunu no fã a ɛwɔ soro nifa so; aduan ho akɔnnɔ a ɛyera; ɔbrɛ a ɛyɛ soronko. |
| Mogya a ɛretu wɔ yafunu mu | Nsu a mogya ayɛ no ma anaasɛ wɔde tarry ayɛ; mogya a ɛfe a ɛyɛ bruu anaa ɛte sɛ kɔfe a wɔayam. |
| Nsunsuanso bɔne a mpɛn pii no ɛnyɛ aniberesɛm, nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo | |
| Ayamtuo | Akisikuru a ɛma obi ho yɛ hyew. |
| Yafunu mu yaw | Yafunu mu yaw anaasɛ ɛnyɛ dɛ. |
| Ɔfe ne Akisikuru | Ɔfe anaasɛ ɔte nka sɛ ɔrefe. |
Nneɛma afoforo a ebia ɛne aduru no bedi nkitaho
Nnuru afoforo bi a worenom betumi aka sɛnea Maralixibat yɛ adwuma. Enti, ɛho hia sɛ woka nnuru a worenom nyinaa (a vitamin, nhabannuru, ne nnuru a wɔde ka ho) kyerɛ wo duruyɛfo. Hwɛ yiye titiriw wɔ nnuru a edidi so yi ho:
- Nnuru a ɛkyekyere bile acid: Sɛ nhwɛso no, cholestyramine, colesevelam, colestipol.
- Nnuru bi a wɔde ma srade so tew: sɛ nhwɛso no, atorvastatin, lovastatin, simvastatin.
Wobɛyɛ dɛn de aduru no asie na woayi afi hɔ?
- Fa sie: Fa nnuru toa no sie baabi a ahobammɔ wɔ a mmofra ne afieboa ntumi nkɔ hɔ. Fa sie wɔ dan mu hyew (a ɛwɔ digrii Celsius 20-25 ntam). Nea ɛho hia sen biara no, tow aduru biara a aka wɔ nnafua 45 akyi bere a woabue toa no.
- Nneɛma a Wɔtow gu: Sɛ wopɛ sɛ wotow nnuru a ne bere atwam anaasɛ wompɛ a, bisa wo nnurutɔnbea anaa ayaresabea nhyehyɛe bi a ebegye atom ho asɛm. Sɛ ɛnte saa a, hwɛ nea wɔakyerɛw so no hwɛ sɛ ɛnyɛ hwee sɛ wobɛtow nnuru no agu nwura mu anaa.Mfa nnuru nhohoro tiafi mu da a wunni kan nkɔ wo duruyɛfo nkyɛn. Sɛ worebɛtow agu nwura mu a, yi nnuru no fi toa no mu, fa biribi te sɛ kɔfe a wɔayam, dɔte kakra, anaa mpataa nwura fra mu, na fa gu kotoku a wɔatoto mu denneennen mu na tow gu nwura mu.
Nkrasɛm a Wɔde Kɔ Fie
- Maralixibat (Livmarli) yɛ aduru titiriw bi a ɛsa honam ani yaw a emu yɛ den a Alagille yare no de ba no.
- Nom saa aduru yi bere koro mu da biara, simma 30 ansa na woadi aduan a edi kan wɔ da no mu. Fa syringe soronko a ɛka aduru no ho no susuw.
- Ka nnuru afoforo a worenom nyinaa (titiriw cholestyramine ne nnuru a ɛma mogya mu srade so tew) kyerɛ wo duruyɛfo.
- Sɛ wo ho yɛ wo hyew denneennen, wuhu sɛ wo mmerɛbo asɛe (aniwa/honam ani yɛ kɔkɔɔ, wo nsu a ɛyɛ tuntum), anaa wo yafunu mu mogya retu (nsu a ɛyɛ tuntum) a, hwehwɛ ayaresa ntɛm ara.
- Ɛho hia sɛ wobɛkɔ wo duruyɛfo nkyɛn wɔ nna a wɔahyɛ da ayɛ mu ahwɛ sɛnea wo vitamin dodow ne wo mmerɛbo no yɛ adwuma bere a worenom aduru no.
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