Ɛtɔ mmere bi a, oduruyɛfo a ɔfata wo na ɔte wo ase a wubenya no betumi ayɛ den kakra. Ɛsono yɛn nyinaa, ɛsono yɛn ahiade ne nea yɛpɛ. Enti sɛ wowɔ tebea bi a ɛntaa nsi te sɛ hATTR Amyloidosis , ebia wubehu sɛ ɛyɛ den kɛse mpo. Sɛ woresa tebea a ɛte sɛɛ a, ɛho hia sɛ wunya oduruyɛfo a ɔwɔ yare no ho ntease pa na ɔbɛma wo ɔhwɛ dodow a wuhia. Nokwarem no, sɛ wubenya ayaresa a eye sen biara a, ɛsɛ sɛ wohwehwɛ animdefo pii a wɔyɛ adwuma ahorow.
Nnuruyɛfo bɛn na wɔsa hATTR?
Sɛ yɛbɛka no tiawa a, hATTR amyloidosis yɛ yare a ɛntaa nsi a ebetumi aka wo nipadua no akwaa pii bere koro mu. Eyi kyerɛ sɛ worentumi nnya ayaresa mfi oduruyɛfo titiriw biako pɛ hɔ. Wubehia mmoa a efi kuw bi a wɔyɛ adwuma ahorow pii hɔ.
Sɛ nhwɛso no, sɛ yare yi ka wo koma a, ebehia sɛ wokɔ koma ho oduruyɛfo nkyɛn. Ɔkwan foforo so no, sɛ wowɔ ntini mu haw bi, te sɛ wo nan a ɛyɛ mmerɛw anaasɛ ɛyɛ mmerɛw a, ebehia sɛ wokɔ ntini ho oduruyɛfo nkyɛn. Enti, sɛnkyerɛnne ahorow a worehu, akwaa a ɛka wo, ne baabi a yare no asɛe no kɛse no na ɛbɛkyerɛ nnuruyɛfo atitiriw a ɛsɛ sɛ wuhu wɔn.
Wɔ pon a ɛwɔ aseɛ ha yi mu no, yɛbɛhunu animdefoɔ a wɔtaa hia wɔ hATTR yareɛ mu ne sɛnkyerɛnne ahodoɔ a wɔsa.
| Aduruyɛ mu ɔbenfo | Nsɛnkyerɛnne/tebea horow a ɛtaa ba a wɔsa |
|---|---|
| Koma ho ɔyaresafo | Koma no dwumadi a ɛyɛ mmerɛw (Cardiomyopathy), koma a ɛnyɛ adwuma yiye, ɔhome a ɛyɛ den. |
| Ntini mu yare ho ɔbenfo | Akwaa a ɛyɛ mmerɛw, ɛyɛ mmerɛw, ɛyaw, ne nkate a ɛyera wɔ akwaa no mu (Peripheral Neuropathy). |
| Yafunu mu yafunu ho ɔyaresafo | Yafunu mu yaw, akisikuru, akisikuru, mu duru a ɛso tew, akisikuru. |
| Nephrologist ho ɔyaresafo | Bere a asaabo no aka (e.g. protein a ɛwɔ nsu mu). |
| Aniwa ho ɔyaresafo | Bere a aniwa no aka (e.g. aniwa no nhyɛso a ɛkɔ soro, aniwa a ɛyɛ kusuu). |
| Awosu Ho Ɔfotufo | Esiane sɛ eyi yɛ awosu mu yare nti, ɛsɛ sɛ wotu mmusua fo wɔ asiane a ɛwɔ mu ne awosu mu nhwehwɛmu ho. |
Ebia wo sɛnkyerɛnne ahorow no begyina nkwaadɔm mu nsakrae pɔtee a ɛwɔ Transthyretin (TTR) awosu mu abɔde a ɛde yare no ba no so. Eyi na ɛbɛkyerɛ nnuruyɛfo ko a wuhia. Ebia ɛho behia nso sɛ wokɔ animdefo afoforo nkyɛn sɛ bere kɔ so no, sɛnkyerɛnne foforo ba bere a yare no kɔ so no a.
Ɔkwan bɛn so na wobetumi anya hATTR ho ɔbenfo wɔ Sri Lanka?
Sɛ wɔresa yare a ɛntaa nsi te sɛ eyi a, ɛho hia yiye sɛ wonya ɔhwɛ titiriw. Wɔ Sri Lanka no, ɔkwan a eye sen biara a wobɛfa so ayɛ eyi ne sɛ wobɛkɔ ayaresabea kɛse bi a nnuruyɛfo atitiriw pii yɛ adwuma wɔ beae biako.
Mpɛn pii no, wɔ aban ayaresabea akɛse te sɛ Teaching Hospitals ne National Hospital of Sri Lanka mu no, animdefo a wɔyɛ adwuma ahorow hyiam sa ayarefo yare. Ebia ankorankoro ayaresabea akɛse bi nso wɔ saa adwumayɛbea yi.
Ɛsɛ sɛ anammɔn a edi kan wɔ akwantu yi mu ne sɛ wobɛkɔ w’abusua oduruyɛfo (GP) nkyɛn. Obetumi de wo akɔ oduruyɛfo titiriw a ɔfata sen biara anaa ayaresabea a nnuruyɛfo kuw bi wɔ hɔ, a egyina wo sɛnkyerɛnne ahorow so.
Mfaso a ɛwɔ so sɛ wubenya ayaresa wɔ beae a ɛte sɛɛ ne sɛ wo nyinaaSɛ wowɔ aduruyɛ ho kyerɛwtohɔ wɔ baabi biako a, ɛkyerɛ sɛ ɛnyɛ den sɛ nnuruyɛfo betumi ne wɔn ho wɔn ho asusuw wo tebea no ho na wɔayɛ ayaresa nhyehyɛe a eye sen biara. Wubetumi nso asua ayaresa foforo anaa ayaresabea sɔhwɛ ahorow ho ade.
So mɛda so ara hia m’abusua oduruyɛfo?
Yiw, koraa. Sɛ wowɔ hATTR mpo a, wo duruyɛfo a ɔhwɛ wo titiriw no ho hia yiye. Ɔno ne w’akwahosan mfinimfini. Ɛho hia yiye sɛ wubenya nkitahodi pa wɔ wo kuw a wɔyɛ nnuruyɛfo atitiriw ne w'abusua oduruyɛfo ntam . Mma wo werɛ mmfi sɛ wobɛbɔ w’abusua oduruyɛfo amanneɛ wɔ biribiara a woahu, woasa, woasɔ ahwɛ, ne nea ɛkeka ho Afei nso, fa w’abusua oduruyɛfo amanneɛbɔ ahorow no bi ma w’abusua oduruyɛfo.
Mɛyɛ dɛn ne nnuruyɛfo pii ayɛ m’ayaresa no ho nhyehyɛe?
Ɛwom sɛ eyi betumi ayɛ te sɛ nea ɛyɛ den kakra de, nanso sɛ wudi kan yɛ nhyehyɛe a, ɛnyɛ den koraa.
- Fa w’ankasa fael sie: Fa wo sɔhwɛ amanneɛbɔ, nnuru a wɔakyerɛw, ne akwankyerɛ nyinaa sie fael biako mu. Hwɛ ayaresabea nhoma bi so.
- Ma biribiara nhu: Ka sɛnkyerɛnne foforo biara a wubenya ho asɛm kyerɛ oduruyɛfo biara a wubehu no, anaasɛ sɛ sɛnkyerɛnne dedaw bi mu yɛ den a.
- Bisa nsɛm: Sɛ biribi wɔ hɔ a wonte ase a, nsuro sɛ wubebisa wo duruyɛfo bio. Ɛho hia paa sɛ wunya wo yare no ne ayaresa ho ntease pa.
Mɛyɛ dɛn apaw oduruyɛfo a ɔfata ma me?
Ɛsɛ sɛ wo ne oduruyɛfo a ɔresa wo yare no nya abusuabɔ pa, efisɛ eyi yɛ akwantu a ɛkyɛ.
Ɛyɛ wo hokwan sɛ wopaw oduruyɛfo a obetie wo, ɔne wo di wɔ obu mu, na ɔte nea woreka no ase.
Ebia wobɛpɛ oduruyɛfo a ɔyɛ w’ankasa wo bɔbeasu. Anaasɛ, ebia wobɛpɛ obi a ɔkyerɛkyerɛ nneɛma mu wɔ ɔkwan a wubetumi ate ase so. Sɛ woredi awosu mu tebea bi te sɛ eyi ho dwuma a, ɛho hia sɛ wuhu oduruyɛfo a obetumi akyerɛ wo kwan wɔ sɛnea ɛka abusua no mufo afoforo ne nhwehwɛmu ahorow a ebia wobehia ho.
Sɛ wo ho nyɛ wo dɛ wɔ oduruyɛfo a odi kan a wobɛkɔ no nkyɛn a, mma ɛnhaw wo. Nnuruyɛfo pa afoforo wɔ hɔ a wɔbɛfata wo yiye na wɔate w’ahiade ase. Yɛ nhwehwɛmu bi na hwehwɛ oduruyɛfo a oye sen biara ma wo.
Nkrasɛm a Wɔde Kɔ Fie
- hATTR amyloidosis yɛ yareɛ a ɛka nipadua no akwaa ahodoɔ pii, enti wobɛhia nnuruyɛfoɔ kuo a wɔn ho akokwa wɔ nnwuma ahodoɔ mu mmoa.
- Ɛsɛ sɛ anammɔn a edi kan wɔ w’akwantu no mu ne sɛ wobɛkɔ w’abusua oduruyɛfo (GP) nkyɛn. Ɔde wo bɛkɔ animdefo a wɔfata nkyɛn.
- Ɛho hia sɛ wobɛkɔ so anya nkitahodi pa wɔ nnuruyɛfo a wɔsa wo yare no nyinaa ntam. Fa w’aduruyɛ ho kyerɛwtohɔ nyinaa sie nnidiso nnidiso.
- Gye bere hwehwɛ oduruyɛfo a otie wo, obu wo, na ɔkyerɛkyerɛ nneɛma mu kyerɛ wo tiawa. Oduruyɛfo a wote nka sɛ wo ho tɔ wo na wowɔ ne mu ahotoso nkyɛn a wobɛhwehwɛ ayaresa nso ho hia yiye ma w’adwene mu akwahosan.
- Kae sɛ ɛnyɛ wo nkutoo na wowɔ saa akwantu yi mu. Sɛ nnuruyɛfo kuw a wɔfata kyerɛ wo kwan a, wubetumi ne tebea yi atra ase yiye.
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