Sɛ wo duruyɛfo ka kyerɛ wo anaa wo dɔfo no sɛ wɔwɔ cystic fibrosis (CF) a, ebia wowɔ nsɛmmisa pii wɔ nnuru a wɔbɛkyerɛw ama wo no ho. Esiane sɛ ɛyɛ tebea a emu yɛ den nti, ɛho hia sɛ wɔma wohu nnuru a wɔbɛkyerɛw ama wɔn no yiye. Ɛnnɛ yɛrebɛka nnuru pɔtee a ɛte saa biako ho asɛm. Ɛyɛ aduru a wɔde ka bom a wɔfrɛ no ORKAMBI, a ɛyɛ nnuru abien a wɔfrɛ no Lumacaftor ne Ivacaftor a wɔaka abom.
Aduru bɛn na eyi yɛ? Dɛn ankasa na eyi yɛ?
Sɛ yɛbɛka no tiawa a, cystic fibrosis (CF) yɛ tebea a ɛnam protein bi a ɛtɔ sin wɔ yɛn nipadua mu so ba. Eyi ma nsu a ɛwɔ yɛn ahurututu ne yɛn akwaa ahorow mu, titiriw nsu a ɛyɛ nwini no, yɛ den yiye na ɛyɛ nnam. Susuw ho hwɛ, mpɛn pii no, nsu a ɛwɔ yɛn ahurututu mu no tu kakra, enti epue ntɛmntɛm. Nanso nsu a ɛwɔ obi a ɔwɔ CF mu no yɛ den ankasa, te sɛ gluu. Saa nsu a ɛyɛ den yi kɔhyɛ ahurututu no mu, na ɛma ɛyɛ den sɛ ɔbɛhome, ɔfefe, na ɔtaa nya ɔyare mmoawa.
Lumacaftor a ɔyɛ ɔkyerɛkyerɛfo; Saa aduru a wɔfrɛ no Ivacaftor yi yɛ adwuma denam saa protein a mfomso biara nni ho a mekaa ho asɛm no a ɛkɔ na wosiesie kodu baabi no so. Ɛte sɛ nea woresiesie ɔpon a abubu. Sɛ protein yi fi ase yɛ adwuma yiye a, ɔkwan a nkyene ne nsu fa nipadua no mu nkwammoaa mu no kari pɛ. Afei saa nsu a ɛyɛ den na ɛyɛ nnam no yɛ mmerɛw kakra na efi ase yɛ mmerɛw sɛ wobeyi afi ahurututu no mu. Eyi betumi adi CF ho sɛnkyerɛnne pii so.
Nanso ade biako a ɛsɛ sɛ yɛkae ne sɛ eyi nyɛ aduru a wɔde sa cystic fibrosis (CF). Ɛyɛ ayaresa a ɛboa ma wodi sɛnkyerɛnne ahorow no so na ɛma asetra yɛ mmerɛw ara kwa.
Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woanom nnuru
Ansa na wubefi saa aduru yi ase no, ɛho hia yiye sɛ wobɔ wo duruyɛfo amanneɛ wɔ w’akwahosan ho abakɔsɛm a edi mũ ho. Efisɛ tebea horow bi hwehwɛ sɛ wɔhwɛ so yiye bere a wɔde aduru yi redi dwuma no. Sɛ wowɔ tebea horow a edidi so yi mu biara a, hwɛ hu sɛ wobɛka akyerɛ wo duruyɛfo.
| Akwahosan tebea anaa hokwan | Dɛn nti na ɛsɛ sɛ woka kyerɛ oduruyɛfo no? |
|---|---|
| Mmɛn mu yare | Saa aduru yi betumi aka mmerɛbo no. Sɛ wowɔ mmerɛbo mu haw dedaw a, ebia ɛho behia sɛ wɔyɛ nsakrae wɔ dodow a wode ma no mu anaasɛ ɛho behia sɛ wɔtaa hwɛ wo. |
| Asaabo mu yare | Ɛho hia nso sɛ wodwen asaabo dwumadi ho. |
| Mogya mmoroso | Aduru no betumi ama mogya mmoroso akɔ soro kɛse, enti ɛho hia sɛ wuhu ɛno nso. |
| Sɛ woanyinsɛn anaasɛ worebɔ mmɔden sɛ wubenyinsɛn a | Akyinnye biara nni ho sɛ ɛsɛ sɛ wo ne wo duruyɛfo kasa fa ahobammɔ a ɛwɔ aduru yi mu bere a wonyinsɛn no ho. |
| Sɛ wɔma akokoaa no nufu a | Wo ne wo duruyɛfo nsusuw ho sɛ ebia aduru no nam nufusu so kɔ akokoaa no nkyɛn ne nea efi mu ba no. |
| Nnuru, nnuan, anaa nneɛma a wɔde yɛ nneɛma afoforo ho akisikuru | Saa nsɛm yi ho hia sɛ wuhu sɛ ebia wo ho nyɛ wo hyew wɔ aduru yi anaa nneɛma a ɛwom no bi ho anaa. |
Wode saa aduru yi di dwuma dɛn?
Eyi ne ɔfã a ɛho hia sen biara. Sɛ woamfa saa aduru yi anni dwuma yiye a, ebia nea ebefi mu aba no so atew.
- Fa ka aduan a srade wom ho: Eyi ne mmara a ɛho hia sen biara . Sɛ aduru yi betumi agye nipadua no yiye a, ɛsɛ sɛ wɔde ka aduan a srade wom ho. Sɛ nhwɛso no, fa ka biribi te sɛ nkesua, bɔta, kyiisi, atoko, avocado ho. Sɛ wode ma abofra ketewa a, wubetumi de ama no ne nufusu, nufusu a wɔayam anaa nufusu a srade ahyɛ mu ma te sɛ yogurt, kyiisi.
- Fa no sɛnea wo duruyɛfo kyerɛ no pɛpɛɛpɛ: fa dodow a ɛfata, wɔ bere a ɛfata mu. Kɔ so de di dwuma kosi sɛ wo duruyɛfo bɛka akyerɛ wo sɛ gyae.
- Mfa bobe nsu nka ho: Kwati sɛ wobɛnom bobe aba anaa bobe nsu bere a worenom aduru yi.
- Sɛ wɔde ma mmofra a: Wobetumi akyerɛw saa aduru yi ama mmofra a wɔadi boro mfe 6. Nanso, wo duruyɛfo de eyi ho akwankyerɛ titiriw bɛma wo.
Na sɛ menom nnuru pii nso ɛ?
Sɛ wususuw sɛ woanom nnuru a ɛboro dodow a wɔakyerɛw ama wo a, frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea no ntɛm ara, anaa kɔ ayaresabea a ɛbɛn wo no Dwumadibea a Ɛho Hia Ntɛmntɛm (ETU).
Na sɛ me werɛ fi dose bi nso ɛ?
Sɛ wo werɛ fi sɛ wobɛnom dose bi a, fa no bere a woakae ara pɛ. Nanso, sɛ ennu nnɔnhwerew 6 kosi sɛ wobɛnom dodow a edi hɔ no a, nnom dodow a woayera no. Twa so na fa dodow a edi hɔ no wɔ bere a wɔahyɛ da ayɛ no mu. Mfa nnuru abien prɛko pɛ da.
Nnuru afoforo a ebia ɛne aduru yi bedi nkitaho
Eyi yɛ biribi a ɛsɛ sɛ yɛhwɛ yiye wɔ ho. ORKAMBI tumi ne nnuru afoforo pii di nkitaho. Eyi kyerɛ sɛ sɛ wɔde ka nnuru afoforo ho a, ebetumi asakra ORKAMBI nkɛntɛnso, asakra nnuru afoforo nkɛntɛnso, anaasɛ ɛde ɔhaw ahorow a emu yɛ den aba.
Enti, ɛsɛ sɛ woka nnuru a worenom nyinaa (nnuru a wɔde sa nyarewa afoforo, vitamin, nhabannuru, Ayurvedic nnuru, aduan a wɔde ka aduan ho) kyerɛ wo duruyɛfo.
Nnuru a ebia ɛne aduru yi bedi nkitaho no mu kakraa bi pɛ na ɛwɔ ase ha. Saa list yi nwie pɛyɛ.
| Mfa saa aduru yi nka nnuru foforo biara ho. | |
|---|---|
| Artemether, aduru a wɔde yɛ aduru a wɔfrɛ no lumefantrine | Ranolazine a wɔde yɛ nnuru |
| Lurasidone a wɔde yɛ aduru | Nnuru bi a wɔde ma HIV ne Hepatitis C mmoawa |
| Yɛsrɛ sɛ ka kyerɛ wo duruyɛfo efisɛ eyi betumi ne w’aduru no adi nkitaho. | |
| Nnuru bi a ekum ɔyare mmoawa (sɛ nhwɛso no, Clarithromycin, Erythromycin) . | Nnuru a ekum fungal (sɛ nhwɛso no, Fluconazole, Ketoconazole) . |
| Nnuru a wɔde sa akisikuru (ɛfata) (e.g. Carbamazepine, Phenytoin) . | Aduru a wɔde sa adwenemhaw anaa dadwen |
| Nnuru a ɛma nipadua no tumi ko tia nyarewa (sɛ nhwɛso no, Cyclosporine, Tacrolimus) . | Steroid ahorow (e.g. Prednisone) . |
| Nnuru a wɔde siw awo ano (Estrogen/Progestin hormone) . | Warfarin (aduru a ɛma mogya yɛ mmerɛw) . |
| Nnuru a wɔde kum ɛyaw te sɛ ibuprofen | St. John’s Wort (nhabannuru a wɔde yɛ nnuru) . |
Nneɛma afoforo a ɛsɛ sɛ wususuw ho bere a worenom aduru no
- Aduruyɛ mu nhwehwɛmu daa: Wo duruyɛfo bɛka akyerɛ wo sɛ bra ayaresabea daa. Kɔ bere a ɛfata mu na kɔyɛ nneɛma te sɛ mogya mu nhwehwɛmu. Sɛ wo sɛnkyerɛnne no ankɔ a, ka ho asɛm kyerɛ wɔn.
- Hwɛ sɛnea w’ani hwɛ ade yiye: Asiane ketewaa bi wɔ aduru yi mu sɛ ɛbɛma aniwa ayɛ mmerɛw, titiriw wɔ mmofra mu. Enti, ɛsɛ sɛ woma aniwa ho oduruyɛfo hwɛ w’ani bere ne bere mu bere a worenom aduru no. Sɛ wuhu nsakrae bi wɔ w’ani so a, ka kyerɛ wo duruyɛfo ntɛm ara.
- Hwɛ yiye wɔ awo ano aduru ho: Eyi ho hia yiye sɛ wode nnuru a wɔde siw awo ano a hormone wom redi dwuma a. Ebia ORKAMBI bɛma wɔanyɛ adwuma yiye. Enti, hwɛ hu sɛ wo ne wo duruyɛfo bɛkasa afa awo ano aduru foforo te sɛ kɔndɔm anaa diaphragm a wode bedi dwuma ho .
Nsunsuanso bɔne a ebetumi aba esiane aduru no nti
Te sɛ aduru biara no, eyi betumi de ɔhaw ahorow aba nnipa binom so. Ebi yɛ aniberesɛm, ebi nso yɛ odwo.
| Nneɛma bɔne a anibere wom a ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo no ntɛm ara | |
|---|---|
| Nneɛma a ɛma obi ho yɛ no hyew | Honam ani akisikuru, ɛyaw, anim, anofafa, tɛkrɛma anaa menewa a ɛho ahonhon. |
| Ɔhome a ɛyɛ den anaa koko mu yaw | Sɛ ɛyɛ den ma wo sɛ wobɛhome anaasɛ wote nka sɛ wo moma so reyɛ den a. |
| Nsɛnkyerɛnne a ɛkyerɛ sɛ mmerɛbo asɛe | Ɛyaw a ɛba yafunu no nifa so atifi, aduan ho akɔnnɔ a ɛyera, akisikuru, nsu a ɛyɛ kɔla a ɛyɛ hann, nsu a ɛyɛ kɔkɔɔ anaa bruu tuntum, aniwa anaa honam ani yɛ kɔkɔɔ, ne ɔbrɛ a ɛtra so. |
| Mogya mmoroso a ɛkɔ soro | Oduruyɛfo no bɛhwɛ eyi. |
| Nsakrae a ɛba wɔ aniwa mu | Sɛ w’aniwa te nka sɛ ɛyɛ kusuu a. |
| Nsunsuanso bɔne a mpɛn pii no ɛnyɛ nea egye ntɛmpɛ, nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo | |
| Yafunu mu yaw | Gas a wɔde yɛ adwuma |
| Ayamtuo | Abofono |
| Tipaeɛ | Ɔbrɛ |
| Mmea brayɛ a ɛnkɔ so daa | |
Ɔkwan bɛn so na wode aduru no sie na wotow gu?
- Nneɛma a Wɔde Sie: Fa tablet no sie baabi a mmofra ne afieboa ntumi nkɔ hɔ . Fa sie wɔ dan mu hyew (a ɛwɔ digrii Celsius 20-25 ntam). Mfa nnuru a ne bere atwam nni dwuma.
- Tow: Ɔkwan a eye sen biara a wobɛfa so atow nnuru a ne bere atwam anaasɛ ɛho nhia bio ne sɛ wubeyi nnuru no afi ade no mu, de afra biribi te sɛ kɔfe a wɔde adi dwuma, dɔte, anaa mpataa nwura mu, de ahyɛ kotoku a wɔatoto mu denneennen mu, na woatow agu nwura mu. Mfa nnuru nkɔ tiafi mu gye sɛ wo duruyɛfo ka kyerɛ wo sɛ yɛ saa.
Nkrasɛm a Wɔde Kɔ Fie
- Fa ORKAMBI (Lumacaftor; Ivacaftor) ka aduan a srade wom te sɛ bɔta, kyiisi, anaa nkesua ho bere nyinaa.
- Saa aduru yi yɛ wo nkutoo dea. Mfa nnkyɛ obi foforo biara.
- Ka nnuru afoforo, vitamin, ne nhabannuru a wonom nyinaa ho asɛm kyerɛ wo duruyɛfo.
- Sɛ wunya ɔhaw ahorow a emu yɛ den te sɛ nsakrae a ɛba w’ani so, ɛyɛ den sɛ wobɛhome, anaa ɛyaw a ɛba wo yafunu nifa so atifi fam a, hwehwɛ ayaresa ntɛm ara.
- Fa nna a woayɛ ho nhyehyɛe sɛ wobɛkɔ ayaresabea ne nhwehwɛmu ahorow no sie wo duruyɛfo nkyɛn.
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