Nea ɛsɛ sɛ wuhu fa Migalastat aduru (ma Fabry Yare) ho .

So wo duruyɛfo akyerɛw wo anaa obi a wunim no sɛ ɔnnom aduru bi a wɔfrɛ no Migalastat ? Eyi nyɛ aduru a abu so kɛse wɔ yɛn man yi mu. Enti ebia wowɔ nsɛmmisa pii fa saa aduru yi ho. Ɛyɛ ade a ɛfata sɛ wubesusuw nneɛma te sɛ "Dɛn na ɛbɛba wɔ eyi ho?", "Ɛsɛ sɛ mefa no dɛn?", "So nsunsuanso bɔne bi bɛba ?" Mma ɛnhaw wo, momma yɛnka eyinom nyinaa ho asɛm tiawa na emu nna hɔ.

Sɛ yɛbɛka no tiawa a, dɛn ne Migalastat?

Migalastat yɛ aduru titiriw a wɔde ma nnipa a wɔwɔ Fabry Yare. Afei ebia woresusuw ho sɛ, "Dɛn ne Fabry Yare?"

Fa yɛn nipadua no sɛ adwumayɛbea kɛse. Wɔ adwumayɛbea yi mu no, adwumayɛfo nkumaa pii wɔ hɔ a wɔboa ma biribiara yɛ adwuma yiye. Yɛfrɛ wɔn enzymes . Wɔ obi a ɔwɔ Fabry yare nipadua mu no, wɔnyɛ enzyme pɔtee bi yiye , anaasɛ ɛnyɛ adwuma yiye. Adwuma titiriw a saa enzyme yi yɛ ne sɛ ɛbɛpaapae srade (lipids) bi a ɛwɔ yɛn nkwammoaa mu.

Afei, dɛn na ɛba bere a saa enzyme yi ntumi nyɛ adwuma no? Saa srade nneɛma no fi ase boaboa ano nkakrankakra wɔ akwaa a ɛho hia te sɛ aniwa, asaabo , ne koma mu . Ɛte sɛ efĩ a akɔhyɛ paipu mu. Bere kɔ so no, eyi betumi de akwahosan ho haw ahorow aba.

Nea Migalastat nnuru yɛ ni: Ɛboa saa enzyme a ɛnyɛ adwuma yiye no. Ɛte sɛ nea wode ahoɔden kakra ma odwumayɛni a wabrɛ na woka kyerɛ no sɛ, "Okay, afei yɛ w'adwuma yiye." Aduru no san dan saa enzyme no na efi ase bubu srade a wɔde asie no. Eyi ma yare no ho sɛnkyerɛnne so tew na asiane a ɛwɔ hɔ sɛ wobenya akwahosan ho haw a emu yɛ den no so tew.

Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woafi ase anom nnuru

Ansa na wubefi Migalastat ase no, ɛho hia yiye sɛ wo ne wo duruyɛfo kasa pefee koraa. Dodow a wonim w’akwahosan ho asɛm no, dodow no ara na wobetumi asa wo yare. Hwɛ hu sɛ wobɛka saa nneɛma yi ho asɛm titiriw akyerɛ wɔn.

• Asaabo mu yareɛ : Sɛ wowɔ asaabo mu yareɛ bi a, yɛsrɛ wo ka ho asɛm kyerɛ yɛn.
• Allergies : Wowɔ allergy wɔ Migalastat anaa aduru foforo biara, aduan, anaa aduru a wɔde yɛ nneɛma ho.) Sɛ ɛwɔ hɔ a, akyinnye biara nni ho sɛ ka saa.
• Nyinsɛn : Sɛ woanyinsɛn anaa woreyɛ nhyehyɛe sɛ wubenyinsɛn a, yɛsrɛ wo ka ho asɛm kyerɛ yɛn.
• Sɛ woyɛ ɛna a ɔma nufu a: Sɛ woyɛ ɛna a ɔma nufu nso ka kyerɛ oduruyɛfo no.

Ɔkwan bɛn na eye sen biara a wɔfa so de aduru no di dwuma?

Sɛnea ɛbɛyɛ na woanya aduru yi so mfaso kɛse no, ɛho hia yiye sɛ wode di dwuma yiye. Yɛsrɛ sɛ monkae akwankyerɛ ahorow yi yiye.

• Fa nsu nom: Fa nsu kuruwa mene saa aduru yi nyinaa.
• Mbubu, nbubu, anaa nwe: Ɛsɛ sɛ wɔmene aduru no nyinaa. Mmubu, nbubu, anaa nwe ansa na woanom da.
• Fa yafunu a hwee nni mu: Eyi ne ade a ɛho hia sen biara. Ɛsɛ sɛ wonom saa aduru yi bere a wo yafunu da mpan. Ɛno kyerɛ sɛ, ɛsɛ sɛ wonom aduru no nnɔnhwerew 2 ansa na woadi anaa nnɔnhwerew 2 wɔ bere a woadi akyi.
• Nhwɛso tiawa: Fa no sɛ wonom w’aduru anɔpa nnɔnwɔtwe. Afei ɛsɛ sɛ wudi kosi anɔpa nnɔnsia pɛ. Sɛ wonom w’aduru no wie a, wubetumi adidi bio wɔ anɔpa nnɔn du akyi. Ɛno kyerɛ sɛ ɛsɛ sɛ wo yafunu mu da mpan anyɛ yiye koraa no nnɔnhwerew 4 wɔ w’aduru a wobɛnom no ntam.
• Nea wubetumi anom: Ɛnyɛ hwee sɛ wobɛnom nsu (a ɛnyɛ den, nea ɛyɛ dɛ, anaa nea ɛyɛ dɛ), nnuaba mu nsu a asikre nka ho, ne anonne a carbonated nnim wɔ saa bere yi mu.
• Nnyae kosi sɛ wo duruyɛfo bɛka akyerɛ wo sɛ: Kɔ so fa saa aduru yi di dwuma kosi sɛ wo duruyɛfo bɛka akyerɛ wo sɛ gyae.

Na sɛ wode ma mmofra nso ɛ?

Ebia aduru yi behia sɛ wɔhwɛ so yiye bere a wɔde ma mmofra no. Enti, wo ne wo duruyɛfo nka ho asɛm na di n’akwankyerɛ akyi pɛpɛɛpɛ.

Na sɛ menom nnuru pii nso ɛ?

Sɛ wususuw sɛ woanom nnuru pii sen sɛnea wususuw a, kɔ ayaresabea Emergency Department (ETU) a ɛbɛn wo ntɛm ara. Anaasɛ frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea hɔ no na woanya afotu.

Sɛ wopa nnuru dodow bi a, dɛn na ɛsɛ sɛ woyɛ?

Ɛtɔ da bi a, ebia wo werɛ befi sɛ wobɛnom w’aduru no. Sɛ ɛba saa a, mma ɛnhaw wo.

• Siesie bere a woahwere no bere a woakae ara pɛ.
• Nanso, sɛ aka akyi dodo sɛ wobɛnom dodow a woayera no na ennu nnɔnhwerew 12 kosi sɛ wobɛnom dodow a edi hɔ no a, twa dodow a woayera no so.
• Fa wo dodow a edi hɔ no wɔ bere a wotaa fa no mu. Mfa nnuru abien prɛko pɛ da mfa nsiesie dodow a woayera no.

So nneɛma bi wɔ hɔ a ɛne aduru yi nhyia?

Nneɛma kakraa bi na ebetumi ne Migalastat adi nkitaho, nanso titiriw biako wɔ hɔ.

• Caffeine: Caffeine a ɛwɔ kɔfe, tii, ne anonne a ɛyɛ dɛ bi mu no betumi asiw aduru yi a etu mpɔn no kwan. Ɛyɛ papa sɛ wobɛkwati biribiara a caffeine wom nnɔnhwerew 4 a ɛsɛ sɛ wode yafunu da mpan no.

Ebia saa nsɛm a wɔahyehyɛ yi renwie pɛyɛ. Enti, ka nnuru afoforo, nhabannuru, vitamin, ne nnuru a wɔde ka aduan ho a worenom nyinaa ho asɛm kyerɛ wo duruyɛfo. Afei nso, sɛ wonom sigaret anaa wonom nsa a, ka kyerɛ wo duruyɛfo.

Nsunsuanso bɔne a ebetumi aba esiane nnuru nti

Te sɛ aduru biara no, Migalastat betumi de ɔhaw ahorow aba nnipa binom so. Nanso, ɛnyɛ obiara na onya bi. Momma yɛnhwɛ nea saa nsunsuanso bɔne yi yɛ ne nea sɛ ɛba a ɛsɛ sɛ yɛyɛ.

Saa nsɛm a wɔahyehyɛ yi nka nsunsuanso bɔne a ebetumi aba nyinaa ho. Bio nso, sɛ wuhyia biribi a ɛyɛ soronko a, wo ne wo duruyɛfo nka ho asɛm.

Wobɛyɛ dɛn akora w’aduru no so yiye?

Sɛ aduru no bɛkɔ so ayɛ papa a, ɛsɛ sɛ wɔkora so yiye.

• Twe wo ho fi mmofra ne afieboa ho.
• Fa sie wɔ dan mu hyew (a ɛwɔ digrii Celsius 20 kosi 25 ntam). Bɔ ho ban fi ɔhyew a ano yɛ den anaa awɔw a ano yɛ den ho.
• Fa aduru no sie nea wɔde ahyɛ mu no mu kosi sɛ bere bedu. Bɔ ho ban fi nsu ho.
• Mfa nnuru a ne bere atwam nni dwuma.

Mɛyɛ dɛn atow nnuru a wɔmfa nni dwuma anaasɛ ne bere atwam agu?

Ɛnyɛ adwene pa sɛ wobɛtow nnuru a ne bere atwam agu nwura mu kɛkɛ anaasɛ wobɛhohoro akɔ tiafi mu. Wobetumi apira nneɛma a atwa yɛn ho ahyia. Bisa wo duruyɛfo anaa ayaresabea no eyi ho asɛm. Ɛtɔ mmere bi a ebia ayaresabea ahorow wɔ nhyehyɛe ahorow a wɔde bɛsan agye eyinom.

Sɛ ɔkwan a ɛte saa nni hɔ na oduruyɛfo no ka sɛ asiane biara nni ho sɛ wobɛtow agu nwura mu a, nea ɛsɛ sɛ woyɛ ni:

1. Yi aduru no fi packet no mu.

2. Fa biribi te sɛ kɔfe a wɔayam, dɔte, anaa mpataa nwura fra yiye.

3. Fa saa afrafrade yi gu kotoku anaa ade a wotumi to mu mu, afei tow gu nwura mu.