Hɛlo! Ɛnnɛ yɛrebɛka aduru bi a ɛyɛ den kakra, nanso ɛho hia paa ho asɛm. Sɛ wo anaa w’abusua mu obi wɔ yare bi a wɔfrɛ no Cystic Fibrosis a, ebia wo duruyɛfo akyerɛw aduru bi a wɔfrɛ no Trikafta ama wo. Nnuru abiɛsa a wɔaka abom a wɔfrɛ no Elexacaftor, Tezacaftor, ne Ivacaftor na ɛwom. Eyi nte sɛ aduru a wɔde di dwuma daa, na mmom ɛyɛ aduru titiriw bi a ɛkɔ nea ɛde yare no ba no ntini so na ɛka no. Enti ma yɛnhwɛ sɛnea wɔde aduru yi di dwuma pɛpɛɛpɛ, nneɛma a ɛsɛ sɛ yɛhwɛ yiye wɔ ho, ne ɔhaw ahorow a ebetumi de aba.
Dɛn na ɛba wɔ aduru yi ho ankasa?
Sɛ yɛbɛka no tiawa a, Cystic Fibrosis yɛ awosu mu yare a ɛma nipadua mu nsu ahorow, titiriw nsu a ɛwɔ akwaa te sɛ ahurututu ne dwensɔtwaa mu no yɛ kɛse dodo na ɛyɛ nnam. Eyi betumi ama ahome mu ayɛ den, ahurututu mu yare, ne aduan mu haw.
Saa aduru yi, Trikafta, yɛ adwuma denam protein bi a ɛnyɛ adwuma yiye wɔ ayarefo a wɔwɔ awosu mu nsakrae pɔtee bi a wɔfrɛ no F508del mu a ɛteɛ no fã bi so. Eyi kyerɛ sɛ sɛ́ anka ebesiw sɛnkyerɛnne ahorow no so no, ɛboa ma awosu mu sintɔ a ɛda adi a ɛde yare no ba no nkɛntɛnso so tew. Eyi yɛ ahotɔ kɛse ma ayarefo yi ankasa.
Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woafi ase anom nnuru
Ɛho hia yiye sɛ wo duruyɛfo hu w’akwahosan ho abakɔsɛm nyinaa ansa na wakyerɛw saa aduru yi ama wo. Saa aduru yi mfata obiara. Hwɛ hu sɛ wobɛka akyerɛ wo duruyɛfo, titiriw sɛ wowɔ tebea horow yi bi a:
- Sɛ wowɔ asaabo mu yare biara a .
- Sɛ wowɔ mmerɛbo mu yare biara a (eyi ho hia yiye).
- Sɛ wowɔ Elexacaftor, Tezacaftor, Ivacaftor, anaa aduru foforo biara, aduan, anaa aduru a wɔde yɛ aduru a ɛwɔ aduru yi mu ho akisikuru a .
- Sɛ woanyinsɛn anaasɛ woreyɛ nhyehyɛe sɛ wobɛwo akokoaa daakye a enni akyiri a.
- Sɛ woyɛ ɛna a ɔma nufu a.
Wo duruyɛfo no begyina saa nsɛm yi so asi gyinae sɛ ebia aduru yi fata wo anaasɛ ɛsɛ sɛ wɔsesa dodow a wɔde ma no.
Ɔkwan bɛn so ankasa na mede saa aduru yi di dwuma?
Sɛnea ɛbɛyɛ na woanya aduru yi so mfaso kɛse no, ɛho hia sɛ wonom sɛnea wɔakyerɛ no.
Ade a ɛho hia sen biara ne sɛ bere nyinaa wobɛnom saa aduru yi ne aduan a ngo anaa srade wom , efisɛ nnuru a ɛwɔ aduru yi mu no, sɛ wɔde ka srade ho a, nipadua no twetwe yiye.
Sɛ nhwɛso no, wubetumi anom aduru yi:
- Nea ɛne nkesua
- Nea wɔde peanut butter ayɛ
- Ne aduan a wɔde kyiisi ayɛ (e.g. cheese pizza) .
- Nea ɛne avocado ka ho
- Ne yogurt (yogurt a srade wom) .
Nneɛma afoforo a ɛsɛ sɛ wokae:
- Mene nnuru no nyinaa . Mmubu anaa nsɛe wɔn, anaasɛ nwe wɔn te sɛ akutu.
- Bɔ mmɔden sɛ wobɛnom w’aduru no bere koro mu da biara. Sɛ wode eyi yɛ wo su pɛ a, wo werɛ remfi.
- Mfa saa aduru yi nka bobe anaa bobe nsuo ho da. Nneɛma a ɛwɔ bobe aba mu nsu mu no betumi aka ɔkwan a saa aduru yi yɛ adwuma no kɛse.
- Nnyae w’aduru nom kosi sɛ wo duruyɛfo bɛka akyerɛ wo.
- Ɛtɔ mmere bi a wɔkyerɛw saa aduru yi ma mmofra a wɔadi boro mfe 6, nanso wɔ aduruyɛfo hwɛ titiriw ase nkutoo.
Na sɛ menom nnuru pii mpofirim nso ɛ?
Sɛ wususuw sɛ woanom aduru yi dodo a, mma wo ho nnyɛ wo hu. Frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea hɔ ntɛm ara . Anaasɛ kɔ ayaresabea a ɛbɛn wo no Emergency Treatment Unit (ETU) . Ɛyɛ papa sɛ wubetumi de nnuru a wɔde ahyɛ mu no akɔ bere a worekɔ no.
Nneɛma a ɛnsɛ sɛ wɔde di dwuma wɔ aduru yi ho
Trikafta yɛ aduru a ano yɛ den a ebetumi ne nnuru afoforo adi nkitaho. Enti, ɛsɛ sɛ woka nnuru a worenom nyinaa kyerɛ wo duruyɛfo, ɛnyɛ nea wo duruyɛfo akyerɛw ama wo no nko, na mmom nnuru a wɔtɔn a wɔmfa nnuru nni dwuma wom, vitamin, ne nhabannuru nso.
| Nnuru ne nnuan a ebia ɛne Trikafta bedi nkitaho | |
|---|---|
| Kwati sɛ wode Trikafta bɛka eyinom ho | |
| Nnuru bi a wɔde sa akisikuru | Carbamazepine, Phenobarbital, Phenytoin, aduru a ɛma nipadua no yɛ adwuma |
| Nnuru a ekum ɔyare mmoawa | Rifampin, Rifabutin a wɔde yɛ nneɛma |
| Nneɛma a wɔde nhabannuru yɛ | Ɔhotefo Yohane Wort |
| Aduane | Grapefruit ne grapefruit nsuo |
| Bisa wo duruyɛfo sɛ ebia wo ne eyinom renom Trikafta anaa. | |
| Nnuru afoforo a ekum ɔyare mmoawa | Clarithromycin, Nkwammoaa mu aduru a wɔfrɛ no Erythromycin |
| Nnuru a ɛko tia fungal | Fluconazole, Itraconazole, Ketoconazole a wɔde di dwuma |
| Nnuru a ɛma nipadua no tumi ko tia nyarewa | Cyclosporine, Sirolimus, Tacrolimus a wɔde di dwuma |
| Foforɔ | Digoxin, Warfarin, nnuru bi a wɔde sa asikreyare (e.g. Glimepiride, Glipizide) . |
Nneɛma bɔne bɛn na ebetumi afi aduru no a wɔnom mu aba?
Te sɛ aduru biara no, Trikafta betumi de nsunsuanso bɔne bi aba. Eyinom bi betumi ayɛ aniberesɛm. Enti ɛho hia paa sɛ wohu eyi.
| Nsunsuanso bɔne | Nkyerɛkyerɛmu ne nea ɛsɛ sɛ wɔyɛ |
|---|---|
| Nneɛma bɔne a anibere wom a ɛsɛ sɛ wobɔ wo duruyɛfo amanneɛ ntɛm ara | |
| Nsɛnkyerɛnne a ɛkyerɛ sɛ mmerɛbo asɛe | Nsu a ɛyɛ kɔkɔɔ anaa bruu tuntum, aniwa anaa honam ani yɛ kɔkɔɔ, ɛyaw wɔ yafunu no atifi nifa so, aduan ho akɔnnɔ a ɛyera, akisikuru, ɔbrɛ a ɛyɛ soronko. Sɛ wuhu eyinom a, ka kyerɛ wo duruyɛfo ntɛm ara. |
| Nneɛma a ɛma obi ho yɛ no hyew a emu yɛ den | Honam ani akisikuru, ɛyaw, anim, ano anaa tɛkrɛma a ɛho ahonhon, ɛyɛ den sɛ wobɛhome. Eyi yɛ asɛm a egye ntɛmpɛ. |
| Nsakrae a ɛba wɔ aniwa mu | Bɔ nsakrae biara ho amanneɛ kyerɛ wo duruyɛfo , te sɛ w’ani fitaa a ɛyɛ mununkum (cataracts) anaasɛ w’aniwa a ɛyɛ mmerɛw. |
| Asikre a ɛwɔ mogya mu a ɛba fam (Hypoglycemia) . | Ahomegye, adwenem naayɛ, adwenemhaw, ɔkɔm a ɛboro so, fifiri a ɛtra so, ahopopo, ne koma bɔ ntɛmntɛm. |
| Nsunsuanso bɔne a mpɛn pii no ɛnyɛ aniberesɛm, nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo | |
| Nnuan a wɔyam no mu haw ahorow | Yafunu mu yaw, akisikuru, gas. |
| Nsɛnkyerɛnne a ɛtaa ba | Tiyɛ, adwenemhaw, atiridiinini, sinus a ɛyɛ den. |
| Titiriw ma mmea | Ɛyaw a ɛba bere a obi rekɔ brayɛ mu. |
Sɛ wowɔ sɛnkyerɛnne foforo biara a ɛyɛ soronko a enni saa din yi mu a, ka ho asɛm nso kyerɛ wo duruyɛfo.
Nkrasɛm a Wɔde Kɔ Fie
- Trikafta yɛ aduru a ɛho hia paa ma Cystic Fibrosis a ɛka nea ɛde yare no ntini ba.
- Ɛsɛ sɛ wɔde saa aduru yi ka aduan a ngo anaa srade wom ho . Kwati sɛ wobɛnom bere a wo yafunu da mpan.
- Mfa saa aduru yi nka bobe nsuo ho da. Afei nso, ka nnuru afoforo a worenom nyinaa ho asɛm kyerɛ wo duruyɛfo.
- Sɛ wunya mmerɛbo a asɛe ho sɛnkyerɛnne (aniwa a ɛyɛ kɔkɔɔ, wo nsu a ɛyɛ tuntum) anaasɛ wo ho yɛ wo hyew kɛse a, hwehwɛ ayaresa ntɛm ara.
- Munhyia oduruyɛfo no da a wɔahyɛ no na mma mogya ne aniwa mu nhwehwɛmu a ɔkyerɛw ma no no nmpa wo ti so.
- Saa aduru yi yɛ wo nkutoo dea. Mfa nkyerɛ afoforo da.
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