Fa no sɛ, worenya ahoɔden kɛse anɔpa yi. Wonni ɛyaw biara wɔ wo nipadua mu. Wubetumi ayɛ wo da biara da nnwuma nyinaa fɛfɛɛfɛ. Nanso sɛ wosɔre ɔkyena anɔpa a, wote nka sɛ wuntumi mfi mpa so mpo. Wo nipadua nyinaa ayɛ wo yaw na wabrɛ. Worentumi nsusuw adwuma a woyɛɛ no yiye nnɛra no ho mpo. Eyi yɛ tebea a sɛnkyerɛnne ahorow no kɔ soro na ɛso tew da biara da, dapɛn biara, a ɛno ne nea yɛfrɛ no ‘Dynamic Disability’ wɔ aduruyɛ mu. Ɛwom sɛ eyi yɛ asɛmti a emu yɛ den kakra de, nanso momma yɛnka ho asɛm nnɛ ara kwa.
Dɛn ne ‘Dynamic Disability’?
Sɛ yɛbɛka no tiawa a, ‘dynamic disability’ ne bere a tebea bi ho sɛnkyerɛnne ntra hɔ sɛnea ɛte bere nyinaa, na mmom ɛsakra wɔ ne kɛse ne ne mu den mu bere kɔ so no. Nna bi wɔ hɔ a wubetumi ayɛ adwuma sɛnea ɛsɛ. Nanso nna foforo no, saa sɛnkyerɛnne ahorow no kɔ soro mpofirim (yɛfrɛ eyi ‘flare-up’) na ɛma ɛyɛ den ma wo sɛ wobɛyɛ wo da biara da dwumadi ahorow.
Saa mmere a yare no ho sɛnkyerɛnne kɔ soro yi betumi atra hɔ nna kakraa bi, adapɛn kakraa bi, anaa asram mpo. Ɛno akyi no, yare no ho sɛnkyerɛnne no brɛ ase na ɛsan kɔ sɛnea na ɛte kan no.
Ade a ɛho hia paa sɛ wobɛte ase ne sɛ: Da bi a wo ho atɔ wo no, ebia obi a obehu wo no rensusuw mpo sɛ woadi dɛm. Wobehu sɛ wowɔ apɔwmuden koraa. Eyi nti na ebia ebinom mpo besusuw sɛ "woredi atoro."
Nsonsonoe a ɛda ‘da pa’ ne ‘da bɔne’ ntam.
Sɛ yɛbɛte tebea yi ase yiye a, ma yɛnhwɛ saa nhyehyɛe yi. Eyi bɛkyerɛ wo nsonsonoe a ɛda nna abien ntam pefee ama obi a ɔwɔ ‘dynamic disability’ tebea no.
| Dwumadie | Da pa | Da Bɔne / Flare-up |
|---|---|---|
| Nantew/apɔw-mu-teɛteɛ | Wubetumi anantew a ɛnyɛ den na woateɛteɛ w’apɔw mu kakra. | Ɛyɛ den sɛ mɛsɔre afi mpa so mpo, me nipadua nyinaa yɛ me yaw, na ɛyɛ den sɛ mɛnantew. |
| Adwuma/Sukuu | Kɔ adwuma, wubetumi ayɛ adwuma yiye. | Mintumi nkɔ adwuma, ɛyɛ den sɛ mede m’adwene besi biribiara so. |
| Asetra mu nkitahodi ahorow | Mete nka sɛ mehyia nnamfo, kɔ akwantu, na mede me ho hyɛ nkɔmmɔ a ɛyɛ anigye mu. | Mente nka mpo sɛ me ne obiara bɛkasa, mete fie kɛkɛ. |
| Adwene mu tebea | M’ani agye na me ho atɔ me. | Ɛyaw ne mmoa a wuntumi nyɛ ho hwee ma woyɛ basaa na wo bo fuw. |
Ayaresa mu tebea horow a ɛtaa de ‘dynamic disability’ ba.
Ɛnyɛ yare biako pɛ na saa tebea yi wɔ. ‘Dynamic disability’ betumi aba wɔ yare biara a enni sabea a ne sɛnkyerɛnne sesa da biara da no ho. Nhwɛso ahorow bi ne:
- Ankylosing Spondylitis (AS): Eyi yɛ ntini mu yare a ɛka akyi berɛmo ne nkwaa afoforo a ɛwɔ nipadua no mu. Nna bi wɔ hɔ a, ɛyaw no ne ne ho a ɛyɛ den no ano nyɛ den, nanso nna foforo nso, ɛyaw no mu yɛ den araa ma ɛyɛ den sɛ wobɛkura akyi berɛmo no mu tẽẽ mpo.
- Multiple Sclerosis (MS): Eyi yɛ yare a ɛka amemene ne akyi berɛmo (nervous system). Nsɛnkyerɛnne no ba na ɛkɔ (ɛsan ba), na afei ɛkɔ koraa anaa ne fã bi (ɛgyae) wɔ nna anaa adapɛn kakraa bi akyi. Wɔsan frɛ eyi sɛ yare a ɛsan ba bio . Ebia worenhyia ɔhaw biara asram anaa mfe pii.
- Tebea afoforo: Nea ɛka ho no, nnipa a wɔwɔ nyarewa a enni sabea te sɛ ntini mu yare, lupus, fibromyalgia, ne Crohn yare nso betumi anya saa ‘mmofra a ɛyɛ nnam’ tebea yi.
So ‘Dynamic Disability’ ne ‘Invisible Disability’ yɛ ade koro?
Ɛwom sɛ wɔtaa frafra nsɛmfua abien yi sɛ biako de, nanso nsonsonoe ketewaa bi da abien no ntam.
- ‘Mmofra a Wɔntumi Nhu’: kyerɛ dɛmdi biara a abɔnten wiase no ntumi nhu. Sɛ nhwɛso no, obi a ɔnhyɛ ahwehwɛ, n’ani nhu ade yiye, ɔte ɛyaw a enni sabea, ɔwɔ adwenemyare, anaa n’aso nyɛ den. Wiase a ɛwɔ akyi no ntumi nhu eyinom.
- ‘Dynamic Mmofra a Wɔadi M dɛm’:Eyi te saa titiriw wɔ tebea horow a sɛnea sɛnkyerɛnne ahorow no mu yɛ den no sakra , a ɛkyerɛ sɛ ɛsakra da biara da no ho.
Sɛ yɛbɛka no tiawa a, ɛkame ayɛ sɛ ‘ dɛmdi a ɛyɛ nnam’ betumi ayɛ ‘ dɛmdi a aniwa nhu’ bere nyinaa. Nanso, ɛnyɛ ‘ dɛmdi a aniwa nhu’ biara na ‘ɛyɛ nnam.’
Nsɛnnennen a ɛwɔ tebea yi a wɔde bɛtra ase mu
Sɛ́ wobɛtra ase a ‘wɔadi dɛm a ɛyɛ nnam’ no nyɛ mmerɛw. Nneɛma pii nti na ɛte saa.
1. Nteaseɛ a ɛntene a ɛfiri afoforo hɔ: "Wo ho ye nnɛra, adɛn nti na woda mpa so nnɛ?" "Ɛbɛyɛ sɛ woafono wo." Sɛ wote nsɛm a ɛte sɛɛ a, ɛyɛ yaw. Nkurɔfo nhu wo tebea no, enti wosusuw sɛ woredi atoro.
2. Nhyehyɛe a ɛyɛ den: Ɛyɛ hu sɛ wobɛyɛ biribi te sɛ wo ne wo nnamfo a wobɛkɔ akwantu anaasɛ wobɛkɔ dwumadi bi ho nhyehyɛe efisɛ sɛ wo sɛnkyerɛnne no mu yɛ den wɔ simma a etwa to no mu a, ɛsɛ sɛ wotwa biribiara mu.
3. Adwuma ne Nhomasua: Sɛ wubetumi akɔ adwuma nnɛ mpo a, adwenem naayɛ a ɛfa sɛ ebia wubetumi akɔ ɔkyena no ma ɛyɛ den sɛ wubekura adwuma a egyina pintinn mu na woatoa wo nhomasua so.
4. Afobu: Wɔ nna pa mu no, wote nka sɛ, "Oh, anka ɛsɛ sɛ meyɛ adwumaden kɛse." Nna bɔne mu no, wote afobu nka sɛ, "Me nti merema nnipa afoforo ahu amane."
Enti ɔkwan bɛn so na wudi tebea yi ho dwuma?
Wɔ saa nsɛnnennen yi nyinaa akyi no, sɛ woboa wo na wohwɛ wo so yiye a, wubetumi atra ase a ahotɔ wom.
- Wo ne wo duruyɛfo nkasa: Eyi ne ade a ɛho hia sen biara. Ma wo duruyɛfo no nka pefee wɔ sɛnea wo sɛnkyerɛnne ahorow sesa da biara da no ho. Sɛ wokyerɛw yare no ho sɛnkyerɛnne da biara da a, ebetumi aboa kɛse. Eyi kyerɛ sɛ wobɛkyerɛw wo nna bɔne, wo nna pa, ne sɛnea na woreyɛ saa nna no. Eyi bɛboa wo duruyɛfo ma wate wo tebea no ase yiye na wayɛ ayaresa nhyehyɛe a eye sen biara.
- Da ayamye adi kyerɛ wo ho: Mmɔ wo ho wɔ nna a emu yɛ den no mu. Tie wo nipadua. Gye w’ahome sɛ wuhia a.
- Di Nkitahodi: Kyerɛkyerɛ wo tebea no mu kyerɛ w’abusuafo, wo nnamfo paa, ne obi a wugye no di wɔ adwumam. Sɛ wɔte wo tebea no ase a, ɛbɛyɛ mmerɛw ama wɔn sɛ wɔde mmoa a wuhia bɛma wo.
- Fa wo ‘nna pa’ di dwuma nyansam: Mma wo ho nnyɛ wo den dodo denam adwuma pii a wobɛyɛ wɔ wo nna pa mu no so. Sɛ woyɛ saa a, ɛda adi sɛ ade kyee no, wubenya ‘flare-up’. Di w’ahoɔden ho dwuma.
Ɛwom sɛ tebea yi a wobɛtra ase no betumi ayɛ den de, nanso kae sɛ ɛnyɛ wo nkutoo na wowɔ hɔ. Sɛ wonya aduruyɛ mu afotu a ɛfata, mmoa a efi w’adɔfo hɔ, na woda ayamye adi kyerɛ wo ho a, wubetumi ama akwantu yi ayɛ mmerɛw.
Nkrasɛm a Wɔde Kɔ Fie
- ‘Dynamic Disability’ yɛ aduruyɛ tebea ankasa a sɛnea wo sɛnkyerɛnne ahorow no mu yɛ den no sakra da biara da anaa bere ne bere mu.
- Wei nkyerɛ sɛ ‘woredi atoro’ anaa ‘ɔyɛ ɔkwasea’.
- Wo nna pa ne wo nna bɔne nyinaa yɛ wo yare no fã.
- Ɛho hia yiye sɛ wobɛka wo tebea no ho asɛm pefee akyerɛ wo duruyɛfo , w’abusua, ne wo nnamfo a wugye wɔn di.
- Sɛ wusua sɛnea wobɛhwɛ w’ahoɔden so na woagye w’ahome bere a ɛho hia a, ebetumi ama asetra ayɛ mmerɛw.
- Ɛnyɛ wo nko ara. Mma ntwentwɛn wo nan ase da sɛ wobɛhwehwɛ aduruyɛ mu mmoa a ɛfata.
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