Fabry yare yɛ awosu mu tebea a ɛntaa nsi, a ɛba esiane enzyme bi a ɛho hia yiye a enni yɛn nipadua mu nti. Eyi betumi aka nipadua no afã horow, te sɛ koma, asaabo, ne ntini ahorow, bere a bere kɔ so no. Enti, sɛ wo nso wowɔ Fabry yareɛ a, ebia wo duruyɛfoɔ akyerɛw wo aduru bi a wɔfrɛ no Agalsidase Beta. Ɛnnɛ, yɛbɛka aduru yi ho asɛm wɔ ɔkwan a ɛnyɛ den na emu da hɔ so.
Aduru bɛn na eyi yɛ?
Sɛ yɛbɛka no tiawa a, Agalsidase Beta (ahyɛnsode din Fabrazyme) yɛ aduru a wɔde si enzyme a enni obi a ɔwɔ Fabry yare nipadua mu no ananmu. Wɔ aduruyɛ mu no, wɔfrɛ eyi ‘Enzyme Replacement Therapy’ (ERT).
Nea ɛho hia paa ne sɛ eyi nyɛ yare no ano aduru. Nanso, saa ayaresa yi betumi aboa kɛse ma wɔadi ɔsɛe a yare no de ba nipadua no so no so na ama yare no ho sɛnkyerɛnne so atew.
Nneɛma a ɛho hia sen biara a ɛsɛ sɛ woka kyerɛ wo duruyɛfo
Ansa na wubefi saa ayaresa yi ase no, ɛho hia sɛ oduruyɛfo no hu nneɛma bi fa w’akwahosan ho. Enti, sɛ wowɔ nea edidi so yi bi a, hwɛ hu sɛ wobɛka ho asɛm akyerɛ oduruyɛfo no.
- Sɛ wowɔ komayare a .
- Sɛ woanya Agalsidase Beta, mannitol, anaa aduru foforo biara, aduan, anaa aduru foforo biara a ɛma wo ho yɛ wo hyew pɛn a.
- Sɛ woanyinsɛn , anaasɛ worehwɛ kwan sɛ wobɛnyinsɛn nnansa yi ara.
- Sɛ woyɛ ɛna a worema wo ba nufu a .
Wode saa aduru yi di dwuma dɛn?
Wɔde saa aduru yi ma sɛ wɔde fa ntini mu (infusion) kɔ ntini bi mu. Eyi nyɛ biribi a wubetumi ayɛ wɔ fie. Akwahosan ho ɔyaresafo a wɔatete no nkutoo na ɔde saa ayaresa yi ma wɔ ayaresabea anaa ayaresabea, wɔ aduruyɛfo hwɛ ase.
Fa di dwuma ma mmofra nkumaa
Ɛsɛ sɛ wɔhwɛ yiye titiriw bere a wɔde saa aduru yi rema mmofra nkumaa no. Ɛtɔ da bi a wɔde ma mmofra a wɔadi mfe 2 pɛ, nanso oduruyɛfo a ɔhwɛ abofra no mu nkutoo na osi gyinae.
Na sɛ menom nnuru pii nso ɛ?
Esiane sɛ wɔde aduru yi ma wɔ ayaresabea, wɔ oduruyɛfo bi hwɛ ase nti, mpɛn pii no hokwan a ɛwɔ hɔ sɛ wɔbɛnom boro so no sua koraa. Nanso, sɛ wususuw sɛ biribi asi a, frɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea no ntɛm ara , anaa kɔ Emergency Treatment Unit (ETU) a ɛbɛn wo no nkyɛn .
Sɛ wopa nnuru dodow bi a, dɛn na ɛsɛ sɛ woyɛ?
Ɛho hia paa sɛ wobɛnom aduru no da a wɔahyɛ ne bere a wɔahyɛ sɛ wɔmfa nyɛ saa ayaresa yi. Sɛ biribi nti wuntumi mma ayaresabea da a wɔahyɛ da ayɛ no a, di kan bɔ wo duruyɛfo anaa ayaresabea amanneɛ na yɛ da foforo ho nhyehyɛe.
Ɛhe na wode aduru no sie?
Esiane sɛ wɔde saa aduru yi ma wɔ ayaresabea anaa ayaresabea nti, wɔremma wo kwan mma womfa nkɔ fie anaa wɔmfa nsie.
Nnuru afoforo a ebia ɛne aduru yi bedi nkitaho
Nnuru a worenom no bi betumi ne Agalsidase Beta adi nkitaho. Enti, ɛho hia paa sɛ wobɛka nnuru a worenom (wɔakyerɛw ama wo, a wɔmfa nnuru nhyɛ mu, nhabannuru, vitamin) nyinaa kyerɛ wo duruyɛfo. Titiriw sɛ worenom nnuru a edidi so yi mu biara a:
- amiodarone a wɔde yɛ aduru
- chloroquine a wɔde yɛ aduru
- gentamicin a wɔde yɛ aduru
- Hydroxychloroquine a wɔde yɛ aduru
- monobenzone a wɔde yɛ adwuma
Saa nsɛm a wɔahyehyɛ yi nka nnuru a ebetumi aba sɛ ɛne wɔn ho wɔn ho di nkitaho nyinaa ho, enti ɛyɛ nea asiane biara nni ho sɛ wobɛbɔ wo duruyɛfo amanneɛ wɔ biribiara a worenom ho.
Dɛn ne nsunsuanso bɔne a ebetumi afi mu aba?
Te sɛ aduru biara no, eyi betumi anya nkɛntɛnso bɔne bi. Ebi yɛ aniberesɛm, ebi nso abu so. Ɛho hia sɛ wohu eyinom.
| Nsunsuanso bɔne | Nkyerɛmu |
|---|---|
| Nneɛma bɔne a ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo anaa ɔyarehwɛfo ntɛm ara | |
| Nneɛma a Ɛyɛ Den a Ɛma Nnipa Ho Yɛ Den | Wora mu akisikuru, ɛyaw, anim, ano anaa tɛkrɛma a ɛho ahonhon. |
| Ɔhome a ɛyɛ den | Ahome a ɛyɛ tiaa, ahome a wɔhome ntɛmntɛm. |
| Koko mu yaw anaasɛ ɛyɛ den | Sɛ wote nka sɛ wɔrepiapia wo koma. |
| Koma a ɛbɔ denneennen | Sɛ wote nka sɛ wo koma rebɔ ntɛmntɛm anaasɛ wo koma bɔ resakra. |
| Foforɔ | Adwene a ɛyɛ den, nsa anaa anan a ɛho ahonhon, adwenemhaw. |
| Nsunsuanso bɔne a mpɛn pii no ɛnyɛ aniberesɛm (nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo ) . | |
| Nea wote nka bere a wode aduru no ahyɛ wo mu no | Atiridii anaa awɔw a wɔte nka. |
| Ɛyaw a ɛba wɔ ɔkwan a ɛkɔ akyiri so | Nipadua mu yaw, ti a ɛyɛ yaw. |
| Nnuan a wɔyam no mu haw ahorow | Akisikuru, ɔfe, yafunu mu yaw anaasɛ ne ho nyɛ no dɛ. |
| Adwene mu tebea | Te nka sɛ ne ho nyɛ no dɛ, ne ho yeraw no. |
Saa nsɛm a wɔahyehyɛ yi nka nsunsuanso bɔne a ebetumi aba nyinaa ho. Sɛ wuhyia biribi soronko bi a, wo ne wo duruyɛfo nka ho asɛm.
Nkrasɛm a Wɔde Kɔ Fie
- Agalsidase Beta (Fabrazyme) yɛ aduru a wɔde si enzyme ananmu ma Fabry yare. Ɛwom sɛ ɛnsa yare no koraa de, nanso ebetumi aboa kɛse ma wɔadi yare no ho sɛnkyerɛnne ne ɔhaw ahorow so.
- Wɔde saa aduru yi fa ntini mu wɔ ayaresabea, enti ɛho hia paa sɛ wonya ayaresa wɔ bere ano.
- Ɛsɛ sɛ woka nnuru foforo biara a worenom, akisikuru biara a wowɔ, ne sɛ wonyinsɛn anaa worenom nufu kyerɛ wo duruyɛfo.
- Sɛ wuhu sɛnkyerɛnne biara te sɛ ahome a ɛyɛ den, wo koko mu yaw, anaa wo honam ani akisikuru bere a wode aduru no rehyɛ wo mu anaa bere a woreyɛ no akyi bere tiaa bi a, ka kyerɛ wo duruyɛfo anaa ɔyarehwɛfo ntɛm ara.
- Sɛ wowɔ nsɛmmisa bi fa saa aduru yi ho a, nsuro anaasɛ ntwentwɛn wo nan ase sɛ wubebisa wo duruyɛfo.
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