Ebia wobɛhaw kɛse bere a wuhu sɛ wowɔ awosu mu yare bi a ɛntaa nsi a wɔfrɛ no hATTR amyloidosis no. Nokwarem no, ɛyɛ yare a ɛntaa nsi koraa. Nnipa 50,000 pɛ na wɔwɔ saa yare yi wɔ wiase nyinaa. Ɛyɛ ade a ɛfata sɛ wobɛte ehu nka na w’adwene atu afra bere a wote ho asɛm no. Sɛ yɛbɛka no tiawa a, awosu mu nkwaadɔm bi a wɔfrɛ no TTR mu nsakrae a ɛba yɛn nipadua mu na ɛde yare yi ba. Ne saa nti, protein bi a ɛnteɛ a wɔfrɛ no amyloids kɔhyɛ akwaa ahorow te sɛ yɛn koma, asaabo, ntini, ne yafunu mu nhyehyɛe mu. Afei saa akwaa no ntumi nyɛ adwuma yiye. Sɛ wokɔ oduruyɛfo nkyɛn nea edi kan a, obebisa wo nsɛm pii. Ɛho hia paa sɛ yedi kan siesie yɛn ho. Afei wo ne oduruyɛfo no betumi apaw ayaresa a eye sen biara ama wo.
Wobɛyɛ dɛn asiesie wo ho ansa na woakɔ oduruyɛfo nkyɛn?
Ɛfata sɛ wohwɛ saa nsɛm yi yiye ansa na woakɔ oduruyɛfo nkyɛn.
Hu w’abusua aduruyɛ ho abakɔsɛm pɛpɛɛpɛ
hATTR amyloidosis yɛ awosu mu yare. Wɔ aduruyɛ mu no, ɛyɛ ``autosomal dominant`` tebea. Wei kyerɛ sɛ sɛ w’awofoɔ mu baako wɔ gene mutation a ɛde saa yareɛ yi ba a, wowɔ hokwan 50% sɛ wobɛnya bi. Sɛ wɔahu sɛ w’awofo mu biako, wo nua bi, anaa abofra bi anya saa yare yi a, ɛho hia yiye sɛ woyɛ awosu mu nhwehwɛmu, sɛ wunni sɛnkyerɛnne biara mpo a.
Kae sɛ, esiane sɛ obi wɔ w’abusua mu wɔ yare no nti, ɛnkyerɛ sɛ ɛda adi sɛ wubenya bi 100%. Nanso sɛ wunim sɛ wowɔ awosu mu abɔde no a ebetumi aboa wo ma woanya ayaresa .
Fa sɔhwɛ amanneɛbɔ a woayɛ nyinaa.
Sɛ woadi kan ayɛ awosu mu nhwehwɛmu biara de ahwehwɛ TTR awosu mu nkwaadɔm mu nsakrae no a, ka ho asɛm kyerɛ wo duruyɛfo. Afei nso, sɛ wo nhwehwɛmu no mu aba kyerɛ sɛ wowɔ awosu mu abɔde no a, wo duruyɛfo bɛkamfo akyerɛ sɛ wɔnyɛ nhwehwɛmu foforo bi. Eyi te saa efisɛ hATTR yare no nso tumi ka akwaa afoforo te sɛ koma, mmerɛbo, ne asaabo. Sɛ wɔayɛ wo koma mu nhwehwɛmu (echocardiogram) anaa mogya mu nhwehwɛmu nnansa yi a, hwɛ hu sɛ wode saa amanneɛbɔ ahorow no nyinaa bɛba.
Fa nnuru a worenom no din bra.
Wo duruyɛfo bɛpɛ sɛ ohu nnuru a wonom nyinaa ho asɛm. Ɛnyɛ nea wo duruyɛfo akyerɛw ama wo no nko na ɛka eyi ho, na mmom nnuru biara a ɛma ɛyaw ano brɛ ase, vitamin, ne nnuru a wɔde ka aduan ho a wobɛnom a wontua hwee nso.
Nsɛmmisa a ebia oduruyɛfo no bebisa wo
Sɛ wusiesie wo ho sɛ wubebua wo nsɛmmisa a, ɛbɛboa wo duruyɛfo ma wasi ayaresa a eye sen biara ama wo ho gyinae. Ɛbɛma wo bere nso de abisa nsɛm biara a ebia wowɔ.
Nea ebia oduruyɛfo no bebisa wo no ho nsɛm tiawa ni.
| Nsɛmmisa afuw | Nea ebia wobebisa wo ne nea ɛsɛ sɛ wuhu |
|---|---|
| Abusua aduruyɛ ho abakɔsɛm | "So obi foforo biara wɔ w'abusua mu a ɔwɔ hATTR?" wobisa. Ebia obi a ɔwɔ w’abusua mu anya komayare, ntini mu yare a ɛkɔ so , carpal tunnel syndrome , anaa dwensɔtwaa mu haw. Ebia na wɔwɔ hATTR na na wonnim. Enti ka saa nsɛm yi kyerɛ wɔn. |
| Awosu mu nhwehwɛmu ne nhwehwɛmu a wɔyɛ de hu yare | "So woayɛ awosu mu nhwehwɛmu?" wobisa. Ebetumi ayɛ den sɛ wobehu hATTR efisɛ ɛka akwaa ahorow pii. Ebia wo duruyɛfo bɛkamfo nhwehwɛmu a edidi so yi akyerɛ: biopsy (wɔfa ntini bi de yɛ nhwehwɛmu), mogya mu nhwehwɛmu, echocardiogram anaa koma MRI a wɔde bɛhwɛ wo koma, ne ntini a ɛkɔ nipadua no mu nhwehwɛmu de ahwɛ sɛnea ntini ahorow no yɛ adwuma. |
| Nsɛnkyerɛnne a ɛfa koma ho | "So wowɔ sɛnkyerɛnne ahorow te sɛ koma a ɛbɔ, ahome a ɛyɛ tiaa, apɔw-mu-teɛteɛ a ɛyɛ den, anaasɛ wo nan a ɛho ahonhon?" hATTR betumi ama protein ahorow yi ayɛ kɛse wɔ koma no mu, na ɛde komayare, komayare, anaasɛ koma ntini no ayɛ kɛse (hypertrophic cardiomyopathy) . Sɛ wowɔ saa sɛnkyerɛnne ahorow yi a, wɔde wo bɛkɔ koma ho oduruyɛfo nkyɛn ntɛm ara. |
| Anisoadehu mu haw ahorow | "So wowɔ nsakrae bi wɔ w'anisoadehu mu, te sɛ floaters?" TTR awosu mu nkwaadɔm mu nsakrae bɛyɛ 20% ka aniwa no. Ɛsɛ sɛ aniwa ho oduruyɛfo hwɛ nsakrae biara a ɛba aniwa mu . |
| Nantew ne ntini mu haw ahorow | "So worehyia ɔhaw wɔ nantew mu?" hATTR yare no ho sɛnkyerɛnne a edi kan na ɛtaa ba no mu biako ne ntini a ɛwɔ wo nsa ne wo nan mu a ɛsɛe (peripheral neuropathy) . Eyi betumi de sɛnkyerɛnne ahorow te sɛ ɛyaw, akisikuru, ne akisikuru aba. Sɛ eyinom renya w’asetra so nkɛntɛnso a, ebia ebehia sɛ wususuw nneɛma te sɛ adwuma mu ayaresa ho . |
| Autonomic nervous system haw ahorow | "So wo ho fifiri boro so, ɛsesa akisikuru ne akisikuru, anaasɛ ɛyɛ den sɛ wubedi wo nsu so?" Eyinom yɛ ɔhaw ahorow a ɛwɔ autonomic nervous system a ɛhwɛ nneɛma te sɛ yɛn koma bɔ, mogya mmoroso, ne aduan a yetumi di so a yentumi nyɛ ho hwee no ho. Sɛ wunya saa sɛnkyerɛnne ahorow yi a, ebetumi ayɛ sɛnkyerɛnne a ɛkyerɛ sɛ wo hATTR tebea no reyɛ kɛse. |
Oduruyɛfo no ka akwan a wɔfa so sa yare nso ho asɛm.
Sɛ oduruyɛfo no si wo tebea no so dua wie a, ɔne wo besusuw ayaresa a wobetumi apaw ho.
So woanom w’aduru dedaw?
Nnuru pii wɔ hɔ a wɔapene so mprempren sɛ wɔde bedi hATTR so na ama ne nkɔso brɛoo. Nhwɛsoɔ bi ne ` Eplontersen (Wainua)`, `inotersen (Tegsedi)`, `patisiran (Onpattro)`, `vutrisiran (Amvuttra)`, `tafamidis (Vyndamax)`, ne `tafamidis meglumine (Vyndaqel)`. Ɛho hia sɛ woka kyerɛ wo duruyɛfo sɛ wode nnuru yi bi adi dwuma pɛn, sɛ ɛboaa wo, anaasɛ ɛde ɔhaw bi bae a.
Dɛn na wususuw wɔ mmerɛbo a wɔde ma obi foforo ho?
Mfe du du pii no, na hATTR ayaresa a eye sen biara ne mmerɛbo a wɔde bɛma obi foforo. Nanso ɛde asiane kɛse ba sɛ obenya nsɛnnennen, titiriw koma mu nsɛnnennen. Nhwehwɛmu foforo kyerɛ sɛ ebia nnuru foforo bi bɛyɛ nea etu mpɔn te sɛ mmerɛbo a wɔde ma obi foforo. Enti wubetumi ne wo duruyɛfo akasa afa mfaso ne ɔhaw ahorow a ɛwɔ oprehyɛn yi ne ayaresa afoforo so ho.
So wobɛpɛ sɛ wode wo ho hyɛ ayaresabea sɔhwɛ bi mu?
Nnuruyɛfo hwehwɛ akwan pa a wɔbɛfa so ahwɛ hATTR ayarefo bere nyinaa. Ɔkwan biako a wɔfa so yɛ eyi ne nnuruyɛ mu sɔhwɛ ahorow. Wɔasɔ aduru biara a wɔapene so nnɛ ahwɛ wɔ saa kwan yi so. Eyi yɛ hokwan kɛse a ɛbɛma wɔanya ayaresa foforo ansa na ɔmanfo nyinaa anya bi. Nanso asiane ahorow bi wɔ hɔ. Wubetumi abisa wo duruyɛfo no eyi nso ho asɛm.
Nkrasɛm a Wɔde Kɔ Fie
- hATTR amyloidosis yɛ yare a ɛntaa nsi, a wonya fi awo mu. Ɛyɛ ade a ɛfata sɛ wobɛte dadwen nka bere a wote ho asɛm no.
- Sɛ wokɔ oduruyɛfo nkyɛn a, fa w’abusua aduruyɛ ho abakɔsɛm, nhwehwɛmu a woanya, ne nnuru a worenom no din bra.
- Ka wo yare no ho sɛnkyerɛnne (koko mu yaw, ɛyɛ den sɛ wobɛhome, wo nsa ne wo nan a ɛyɛ mmerɛw, nsakrae a ɛba w’ani so) kyerɛ wo duruyɛfo a mfa biribiara nsie.
- Wo ne wo duruyɛfo nkasa pefee fa ayaresa a wubetumi apaw (nnuru, oprehyɛn, aduruyɛ mu nhwehwɛmu) ho na bisa nsɛm a wowɔ nyinaa.
- Sɛ wuhu yare no yiye na wunya ayaresa a ɛfata a, wubetumi ne yare yi atra ase yiye.
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