Sɛ oduruyɛfo ka kyerɛ wo ba anaa abusua muni bi sɛ wɔwɔ tebea bi a wɔfrɛ no Spinal Muscular Atrophy (SMA) a, sɛnea ɛbɛyɛ sɛ na emu yɛ duru na ɛyɛ hu... Ɛyɛ asɛm a ɛyɛ nkate kɛse. Nanso mma ɛnhaw wo. Ɛnnɛ, aduruyɛ ho nyansahu anya nkɔso kɛse. Ayaresa foforo wɔ hɔ a ebetumi aboa ma wɔako atia tebea horow yi na ama asetra ayɛ mmerɛw. Ayaresa pɔtee a ɛkɔ akyiri a ɛte saa no biako ne Nusinersen. Ebia woate ho asɛm wɔ edin a wɔde frɛ no Spinraza ase. Enti, ɛnnɛ, momma yɛnka aduru yi, sɛnea wɔde ma, ne nea ɛsɛ sɛ wuhu ho asɛm tiawa na yɛmfa nidi.
Sɛ yɛbɛka no tiawa a, dɛn ne Nusinersen?
Nusinersen yɛ aduru titiriw bi a wɔyɛe titiriw sɛ wɔde bɛsa Spinal Muscular Atrophy (SMA). SMA yɛ awosu mu yare. Wɔ eyi mu no, ntini mu nkwammoaa (motor neurons) a ɛhwɛ yɛn ntini so no yɛ mmerɛw nkakrankakra. Afei ntini ahorow no gyae adwumayɛ yiye.
Eyi ne baabi a Nusinersen ba Saa aduru yi boa yɛn nipadua ma ɛyɛ protein a ɛho hia a wɔfrɛ no SMN (Survival of Motor Neuron). Saa protein yi ma ntini mu nkwammoaa a ɛhwɛ ntini ahorow so no kɔ so nya apɔwmuden.
Nea ɛho hia ne sɛ Nusinersen nyɛ SMA aduru. Nanso, ebetumi aboa ma wɔadi yare no nkɔso so na ama ntini ahoɔden atu mpɔn akodu baabi . Eyi betumi ama ɔyarefo no asetra atu mpɔn kɛse.
Nneɛma a ɛsɛ sɛ woka kyerɛ wo duruyɛfo ansa na woafi ayaresa ase
Ansa na wubefi Neanersen ayaresa ase no, ɛho hia sɛ wode wo anaa wo ba akwahosan tebea ho nkyerɛkyerɛmu a edi mũ ma wo duruyɛfo. Hwɛ hu sɛ wobɛbɔ wɔn amanneɛ wɔ nea edidi so yi ho titiriw:
| Akwahosan tebea anaa hokwan | Dɛn nti na ɛho hia oduruyɛfo no? |
|---|---|
| Asaabo mu yare | Esiane sɛ asaabo no ka ho bi na wɔayi Nusinersen fi nipadua no mu nti, ɛsɛ sɛ oduruyɛfo no hwɛ yiye titiriw sɛ mmerɛwyɛ bi wɔ asaabo no mu a. |
| Mogya a ɛtwetwe mogya mu haw ahorow, te sɛ mogya nkwammoaa a ɛba fam | Ɛtɔ mmere bi a, saa aduru yi tumi ka mogya nkwammoaa dodow, enti sɛ asiane wɔ hɔ sɛ mogya bɛtɔ wo a, ɛsɛ sɛ wo duruyɛfo di kan hu eyi. |
| Sɛ woanyinsɛn anaasɛ worebɔ mmɔden sɛ wubenyinsɛn a | Nsɛm kakraa bi da so ara wɔ hɔ a ɛfa nkɛntɛnso a aduru yi nya wɔ nyinsɛn mu ho, enti ɛsɛ sɛ wo ne wo duruyɛfo susuw asiane ne mfaso a ɛwɔ so ho ansa na woasi gyinae. |
| Sɛ wɔma akokoaa no nufu a | Esiane sɛ ɛnyɛ nea ɛda adi pefee sɛ ebia aduru no nam nufusu so kɔ akokoaa no nkyɛn nti, ɛho hia yiye sɛ wo ne wo duruyɛfo susuw eyi ho. |
Ɔkwan bɛn so na wɔde aduru yi ma nipadua no?
Eyi nyɛ ofie aduru. Nusinersen yɛ aduru a ɔbenfo bi a ɔwɔ ayaresabea anaa ayaresabea de ma.
Eyi nte sɛ tuo a wobɛtaa de abɔ wo nsa anaa wo akyi. Wɔde ma nsu a atwa akyi berɛmo no ho ahyia, wɔ akyi berɛmo no mu. Sɛ yɛbɛka no pɛpɛɛpɛ a, wɔfrɛ eyi intrathecal injection . Nnuruyɛfo kuw bi a wɔatete wɔn na wɔn ho akokwaw na wɔyɛ saa adeyɛ yi.
Wobetumi de saa ayaresa yi ama SMA ayarefo a wɔadi mfe biara, efi mmofra a wɔawo wɔn foforo so kosi mpanyimfo so. Nanso, wo duruyɛfo na osi gyinae bere a wahwɛ ɔyarefo no tebea mu yiye awie no.
Sɛ wopa ayaresa ho nhyehyɛe bi a, dɛn na woyɛ?
Wɔde saa ayaresa yi ma wɔ nhyehyɛe pɔtee bi so. Enti , ɛho hia paa sɛ wobɛkɔ ayaresabea wɔ da a wɔahyɛ sɛ wobɛkɔ akɔgye ayaresa no. Sɛ biribi a egye ntɛmpɛ nti wuntumi nkɔ da a wɔahyɛ no a, frɛ wo duruyɛfo anaa ayaresabea hɔ ntɛm ara na bɔ wɔn amanneɛ. Wɔbɛtu wo fo wɔ nea ɛsɛ sɛ woyɛ ho.
So nsunsuanso bɔne bi wɔ hɔ?
Sɛnea ɛte wɔ aduru biara ho no, nsunsuanso bɔne bi betumi aba bere a wɔde Nusinersen resa no. Eyinom bi yɛ nketenkete, bere a afoforo nso hwehwɛ sɛ wɔde wɔn adwene si so titiriw.
| Nsunsuanso bɔne no su | Mpopoeɛ |
|---|---|
| Nneɛma a ɛsɛ sɛ wode kɔma wo duruyɛfo anaa ayaresabea no Emergency Treatment Unit (ETU) ntɛm ara . | |
| Mogya a ɛretu ho sɛnkyerɛnne |
|
| Asaabo mu haw ahorow | Ɛyɛ den sɛ wobɛtow wo ho anaasɛ nsakrae a ɛba wo nsu dodow a wobɛtow mu. |
| Nneɛma a mpɛn pii no ɛnyɛ aniberesɛm, nanso sɛ ɛkɔ so a, ɛsɛ sɛ wɔbɔ ho amanneɛ kyerɛ oduruyɛfo | |
| Nneɛma bɔne a ɛtaa ba |
|
Sɛ wuhu sɛnkyerɛnne biara a ɛyɛ soronko a wɔankyerɛw wɔ ha a, wo ne wo duruyɛfo nka ho asɛm. Sɛ wususuw sɛ nnubɔne bi de awuduru ahyɛ wo mu a, wubetumi afrɛ Ɔman Awuduru Ho Amanneɛbɔbea a ɛwɔ Colombo Ɔman Ayaresabea .
So ɛne nnuru afoforo di nkitaho?
Wɔmmɔ amanneɛ biara sɛ nnuru afoforo a ɛde Neanersen di nkitaho a anibere wom. Nanso, sɛnea ɛbɛyɛ a wobɛkɔ ɔfã a ahobammɔ wom no, ka nneɛma a worenom nyinaa kyerɛ wo duruyɛfo.
- Nnuru a wɔde sa nyarewa afoforo
- Nnuru a wɔmfa nnuru nkyerɛw mma obi
- Vitamin, nhabannuru, anaa aduannuru a wɔde ka aduan ho
- Afei nso, ka sigaretnom ne nsa a wɔnom ho asɛm kyerɛ oduruyɛfo no.
Wo duruyɛfo bɛhwɛ wo tebea no so daa wɔ w’ayaresa no nyinaa mu. Ɛho behia nso sɛ woma wɔyɛ mogya ho adwuma bere ne bere mu de hwɛ sɛnea w’asaabo yɛ adwuma ne mogya nkwammoaa dodow. Ɛho hia yiye sɛ worenhuw sɔhwɛ ahorow yi so.
Nkrasɛm a Wɔde Kɔ Fie
- Nusinersen yɛ aduru pɔtee bi a ɛboa ma wodi Spinal Muscular Atrophy (SMA) ho sɛnkyerɛnne ahorow so na wodi ho dwuma. Ɛnsa yare no.
- Oduruyɛfo a ne ho akokwaw de saa aduru yi ma wɔ ayaresabea denam nsu a wɔde gu nsu a atwa akyi berɛmo no ho ahyia no mu so.
- Ansa na wubefi ayaresa ase no, ka ayaresa tebea horow a wo anaa wo ba no wɔ nyinaa (titiriw asaabo ne mogya a ɛtwetwe ho haw) ne nnuru a worenom nyinaa kyerɛ oduruyɛfo no.
- Sɛ wuhu nneɛma bɔne a anibere wom te sɛ mogya a ɛretu anaa ɔhaw a ɛwɔ wo nsu mu a, hwehwɛ ayaresa ntɛm ara.
- Ɛho hia paa sɛ wonya ayaresa wɔ bere ano na wɔyɛ mogya mu nhwehwɛmu a oduruyɛfo no akyerɛw ama wo no.
- Sɛ wowɔ nsɛmmisa foforo bi fa saa ayaresa yi ho a, yɛsrɛ wo ntwentwɛn wo nan ase sɛ wubebisa wo duruyɛfo.
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