Sɛ wo duruyɛfo kyerɛw Nitisinone ma wo anaa wo ba a wodɔ no a, ɛyɛ ade a ɛfata sɛ wubenya nsɛmmisa pii. Eyi te saa efisɛ ɛnyɛ aduru a wɔde sa yare a ɛtaa ba a obiara nya. Enti ɛnnɛ, momma yɛnka aduru yi a wɔfrɛ no Nitisinone ho asɛm, nea ɛyɛ ankasa, sɛnea wɔde di dwuma, ne ahwɛyiye a ɛsɛ sɛ woyɛ, ne nyinaa wɔ ɔkwan a ɛyɛ mmerɛw yiye a wubetumi ate ase so.
Aduru bɛn na eyi yɛ? Dɛn na ɛba wɔ Nitisinone ho?
Sɛ yɛbɛka no tiawa a, Nitisinone yɛ aduru a ɛma yɛn nipadua no bubu amino acid bi a wɔfrɛ no tyrosine no brɛoo na ɛhwɛ so. Susuw tyrosine ho sɛ ade a wɔde si dan a wɔde yɛ protein wɔ yɛn nipadua mu.
Wɔde saa aduru yi di dwuma titiriw de sa tebea bi a ɛntaa nsi koraa, a wonya fi awo mu a wɔfrɛ no Hereditary Tyrosinemia Type I. Wɔ nnipa a wɔwɔ saa tebea yi mu no, nipadua no ntumi nsɛe tyrosine (nsakra) yiye. Afei ɛboaboa ano wɔ nipadua no mu na ɛdan nneɛma a awuduru wom a ebetumi asɛe mmerɛbo, asaabo, ne ntini ahorow. Enti nea Nitisinone yɛ ne sɛ esiw saa nneɛma a epira no kwan sɛ wɔbɛyɛ.
Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woafi ase anom nnuru
Ansa na wubefi saa aduru yi ase no, ɛsɛ sɛ wokyerɛkyerɛ saa nneɛma yi mu pefee kyerɛ wo duruyɛfo. Eyi ho hia paa ma w’ahobammɔ.
- Sɛ wowɔ akisikuru wɔ Nitisinone anaa aduru foforo biara, aduan, anaa aduru a wɔde yɛ ade ho a.
- Sɛ woanyinsɛn anaasɛ worebɔ mmɔden sɛ wubenyinsɛn a.
- Sɛ woyɛ ɛna a ɔma nufu a.
Ɔkwan bɛn so na ɛsɛ sɛ mede saa aduru yi di dwuma?
Ɛho hia yiye sɛ wobɛnom aduru no sɛnea oduruyɛfo no akyerɛ no pɛpɛɛpɛ, wɔ dodow pɔtee no mu.
- Sɛnea wobɛnom: Ɛtɔ mmere bi a wubetumi de aduru a wɔde hyɛ mu no apete nsu kakra mu na wode aduru a wɔde ano anom de ama wo ba no. Anaasɛ, wubetumi abubu pill no na wode kakraa bi afra biribi te sɛ apɔw-mu-teɛteɛ mu na wode ama wo ba no. Nanso, ɛmfa ho nea wobɛyɛ biara no, ɛsɛ sɛ wode aduru no di dwuma bere a woayɛ no awie no ara pɛ.
- Bere a ɛsɛ mu: Fa yɛ wo su sɛ wobɛnom w’aduru no bere koro mu da biara. Mma nnnom mpɛn pii nsen sɛnea wo duruyɛfo ka kyerɛ wo no.
- Nnyae aduru yi nom mpofirim: Nnyae saa aduru yi nom da a wo duruyɛfo nka ho afotu. Saa a wobɛyɛ no betumi ama wo tebea no asɛe kɛse.
So wobetumi de saa aduru yi ama mmofra nkumaa?
Yiw, wobetumi akyerɛw saa aduru yi ama abofra a wɔawo no foforo a ɔwɔ saa tebea yi mpo. Nanso ɛsɛ sɛ wɔyɛ no wɔ mmofra oduruyɛfo hwɛ a emu yɛ den ase. Nneɛma titiriw bi wɔ hɔ a ɛsɛ sɛ wususuw ho bere a wode rema mmofra no.
Nsɛm a ɛho hia: Wɔakyerɛw saa aduru yi ama wo nkutoo. Mma nnkyɛ obi foforo biara esiane biribiara nti.
Nsɛntitiriw a ɛsɛ sɛ wususuw ho bere a worenom aduru no
Nneɛma abien bi wɔ hɔ a ɛho hia yiye a ɛsɛ sɛ wohwɛ so yiye bere a worenom aduru yi.
1. Sɔhwɛ ne nhwehwɛmu a wɔayɛ ho nhyehyɛe
Ɛho hia sɛ wokɔ ayaresabea kɔhwɛ wo sɛnea wo duruyɛfo akyerɛ wo no. Bere a worenom aduru yi no, ebehia sɛ woyɛ mogya mu nhwehwɛmu a ɛho hia bi daa de hwɛ sɛnea wo mogya dodow ne sɛnea wo mmerɛbo no yɛ adwuma. Mma nntwa sɔhwɛ ahorow yi so.
2. Aduan Titiriw a Wodi
Eyi ne ade a ɛho hia sen biara . Aduan titiriw bi a wobedi akyi no ho hia te sɛ aduru yi a wobɛnom, anaasɛ ɛho hia sen saa mpo.
Ɛho behia sɛ wudi aduan titiriw bi akyi bere a worenom saa aduru yi no. Ɛho behia sɛ woto amino acid dodow a wɔfrɛ no Tyrosine ne Phenylalanine a ɛwɔ w’aduan mu no ano hye. Wo ne wo duruyɛfo nka eyi ho asɛm, na sɛ ɛho hia a, wo ne aduan ho ɔbenfo a ɔwɔ aban ayaresabea bi nkasa, na di wɔn akwankyerɛ akyi yiye. Sɛ woanni saa aduan yi akyi yiye a, worennya aduru no so mfaso nyinaa.
Dɛn ne aduru yi mu nsunsuanso bɔne a ebetumi afi mu aba?
Te sɛ nnuru biara no, Nitisinone betumi de ɔhaw ahorow bi aba. Momma yɛnkyekyɛ eyinom mu abien.
| Nneɛma bɔne a ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo no ntɛm ara | |
|---|---|
| Nsɛnkyerɛnne a ɛkyerɛ sɛ obi ho yɛ no yaw | Honam ani akisikuru, ɛyaw, anim, ano, anaa tɛkrɛma a ɛho ahonhon. |
| Nsakrae a ɛba aniwa mu | Anisoadehu sesa, aniwa a ɛyɛ kɔkɔɔ, aniwa mu yaw, hann ho nkate. |
| mmerɛbo mu haw ahorow | Aniwa anaa honam ani yɛ kɔkɔɔ, nsu a ɛyɛ tuntum, nsu a ɛyɛ tarry, ɛyaw wɔ yafunu no atifi nifa so. |
| Nsɛnkyerɛnne afoforo a anibere wom | Akuru anaa mogya a ɛtɔ soronko, ɔbrɛ a ɛtra so, atiridii a wɔte nka, aduan ho akɔnnɔ a ɛyera, akisikuru, ne akisikuru a ɛyɛ yaw wɔ wo nsateaa ne wo nan ase. |
| Nsunsuanso bɔne a mpɛn pii no ɛnyɛ aniberesɛm, nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo | |
|---|---|
| Ayamtuo | Kɔ a wɔkɔ asɛnka agua a ɛho ayɛ hare so |
| Wora a ɛyɛ nwunu | Wora a ɛyɛ nwunu |
| Nwi a ɛtɔ | Nwi a ɛtɔ |
Saa nsɛm a wɔahyehyɛ yi nka nsunsuanso bɔne a ebetumi aba nyinaa ho. Sɛ wuhu biribi foforo a ɛyɛ soronko a, wo ne wo duruyɛfo nkasa.
Sɛ wopa dose bi na wonom boro so a, dɛn na wobɛyɛ?
Na sɛ mepa nnuru dodow bi nso ɛ?
Sɛ wo werɛ fi sɛ wobɛnom dose bi a, fa no bere a woakae ara pɛ. Nanso sɛ ɛkame ayɛ sɛ bere aso sɛ wobɛma wo dodow a edi hɔ no a, twa dodow a woayera no so na fa wo dodow a edi hɔ no wɔ bere a woahyɛ da ayɛ no mu. Mfa nnuru mmɔho abien da mfa nsiesie dodow a wo werɛ afi no.
Na sɛ menom nnuru pii nso ɛ?
Sɛ wususuw sɛ woanom aduru yi dodo a, frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea hɔ ntɛm ara . Anaasɛ, kɔ ayaresabea Emergency Unit (ETU) a ɛbɛn wo ntɛm ara sɛnea wubetumi.
Ɔkwan bɛn so na ɛsɛ sɛ mede aduru no sie?
- Fa sie baabi a mmofra ntumi nkɔ hɔ .
- Fa sie wɔ dan mu hyew (a ɛwɔ digrii Celsius 20 kosi 25 ntam).
- Tow nnuru a ne bere atwam gu.
Nkrasɛm a Wɔde Kɔ Fie
- Nitisinone yɛ aduru titiriw bi a ɛsɛ sɛ wɔnom sɛnea oduruyɛfo kyerɛ no ne dodow a wɔakyerɛw ama no.
- Wɔ aduru yi a wɔnom akyi no, ɛho hia nso sɛ wudi aduan titiriw bi (a tyrosine ne phenylalanine nnim) a ɛne no wɔ abusuabɔ akyi.
- Nnyae nnuru nom da a wunni aduruyɛ mu afotu.
- Kɔ ayaresabea ahorow wɔ nna a wɔahyɛ ato hɔ na yɛ mogya mu nhwehwɛmu a ɛho hia nyinaa.
- Sɛ wuhu sɛ nneɛma bɔne bi a anibere wom te sɛ aniwa a ɛyɛ kɔkɔɔ anaasɛ akuru a ɛyɛ soronko a, bɔ wo duruyɛfo amanneɛ ntɛm ara.
- Fa nnuru sie baabi a ahobammɔ wɔ a mmofra ntumi nkɔ.
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