Don dɔw la, a bɛ juguya tiɲɛ na, i yeli bɛ juguya, i farikolo bɛ barika dɔgɔya... Nka waati dɔ tɛmɛnen kɔfɛ, nin bɛɛ bɛ ɲɛ. Waati dɔ tɛmɛnen kɔ, o taamasiɲɛw bɛ segin ka bɔ kɛnɛ kan. Yala nin ko in kɛra i la wa? O ye RRMS suguya ye, o ye sklerose multiple (MS) suguya ye min ka teli ka kɛ. K’a sababu kɛ nin taamasiɲɛ ninnu cogoya ye, a bɛnnen don ka hami ni siran caman sɔrɔ tuma dɔw la. An ka kuma o kan cogo nɔgɔman na, cogo la min bɛ se ka faamuya.
RRMS ye mun ye nɔgɔya la?
RRMS kɔrɔ ye `(Sclérose multiple résidentielle-remitant)` ye. Nin ye `(Sclerose multiple)` walima MS suguya ye min ka teli ka sɔrɔ. MS banabagatɔ 100 la, 80 fo 85 ɲɔgɔn bɛ nin bana in sɔrɔ.
O kɔrɔ bɛ a tɔgɔ la.
- Segin-ka-bɔnye: O bɛ tali kɛ bana taamasiɲɛ kuraw bɔli yɔrɔnin kelen walima taamasiɲɛ kɔrɔw juguyali la. O bɛ se ka kɛ tile damadɔ fo dɔgɔkun damadɔ. O fana bɛ Weele ko ``flare-up`` walima ``exacerbation``.
- Lajɔli : O ye waati ye ni bana taamasiɲɛ minnu tun juguyara, olu bɛ tunu dɔɔni dɔɔni walima ka dɔgɔya pewu waati tɛmɛnen kɔfɛ. O waati kɔnɔ, aw bɛ se ka ɲɛnamaya kɛ cogo la min bɛ kɛ cogo la min tɛ taamasiɲɛ foyi ye.
Miiri k’a filɛ i n’a fɔ fɔɲɔba. O yɔrɔnin bɛɛ, bana taamasiɲɛw bɛ na i n’a fɔ fɔɲɔba, wa u bɛ i dusu tiɲɛ. O kɔ, fɔɲɔba bɛ lafiya, o kɔfɛ, a bɛ makun tugun waati dɔ kɔnɔ. O de ye RRMS cogoya ye.
Bana in tilalen don nin cogo la walasa ka aw ni aw ka dɔgɔtɔrɔ dɛmɛ ka bana taabolo faamuya ani ka fura sugandi min bɛnnen don aw ma kosɛbɛ.
Taamaʃyɛn minnu ka teli ka ye RRMS la, olu ye jumɛnw ye?
RRMS taamasiɲɛw bɛ se ka ɲɔgɔn ta kosɛbɛ mɔgɔ ni mɔgɔ cɛ, nka taamasiɲɛ damadɔw bɛ yen minnu ka teli ka ye. An k’a lajɛ u ye min ye.
| Taamaʃyɛn | Ɲɛfɔli nɔgɔman dɔ |
|---|---|
| Yeli bɛ Changé | Fɛn minnu bɛ i n’a fɔ yelikɛbaliya, kulɛriw bɔli ka ɲɛ, yeli fila, ani dimi ni ɲɛw bɛ lamaga. |
| Dimi walima dusukunnataw bɔnɛni | Farikolo yɔrɔ caman na, i n’a fɔ bolow, senw ani ɲɛda. Tuma dɔw la, a bɛ se ka kɛ ko dusukunnata tɛ o yɔrɔw la. |
| Disi/kɔnɔbara gɛlɛya | A bɛ kɛ i n’a fɔ mɔgɔ dɔ b’i minɛ kosɛbɛ i disi walima i kɔnɔbara lamini na. Mɔgɔ dɔw fana b'o Weele ko "MS hug". |
| Sɛgɛn min tɛ se ka miiri | Sɛgɛn min bɛ i degun, min tɛ se ka ɲɛfɔ, i bɛ min sɔrɔ hali ni i sunɔgɔra ka ɲɛ. O ni sɛgɛn gansan tɛ kelen ye kosɛbɛ. |
| Sugunɛ ni banakɔtaa gɛlɛyaw | Gɛlɛyaw i n’a fɔ koli tɛ se ka jɔ ni aw mago bɛ koli la (kɔrɔtɔ), walima ka gɛlɛya ka a daminɛ ni aw b’a fɛ ka koli kɛ (sigasiga). |
| Dusukunnata min bɛ i n’a fɔ kuran sɔgɔli. | Ni aw ye aw kɔ kɔrɔta ka taa ɲɛfɛ, aw bɛ se ka a ye ko kuran bɛ ka jigin aw kɔkolo la. |
| Taama gɛlɛya ani farikolo gɛlɛyaw | I tɛ balansi tiɲɛ ni i bɛ taama, i farikolo bɛ barika dɔgɔya, walima i bɛ gɛlɛya. |
| Gɛlɛya minnu bɛ sɔrɔ hakilijagabɔ ni hakilijagabɔ la | A bɛ kɛ gɛlɛya ye ka i hakili to fɛnw na, wa i tɛ se ka i sinsin fɛn kelen kan. O fana bɛ Weele ko ``Brain fog''. |
Fiɲɛ bilali waati, o taamasiɲɛ caman bɛ se ka kɛ ɲɔgɔn fɛ. Mɔgɔ dɔw fɛ, o taamasiɲɛw bɛ tunu pewu yafa waati. Dɔ wɛrɛw fɛ, a taamasiɲɛ dɔw bɛ se ka to sen na. Nka aw kana aw hakili ɲagami , furakɛli dɔw bɛ yen minnu bɛ se ka nin taamasiɲɛ basigilen ninnu kunbɛn.
Fɛn jumɛnw de bɛ kɛ sababu ye ka dɔ fara o taamasiɲɛw kan?
Tuma dɔw la, aw bɛ se k’a ye ko fɛn dɔw bɛ aw ka bana taamasiɲɛw juguya. An b'o wele ko ``Triggers.'' Nka aw hakili to a la ko min bɛ mɔgɔ dɔ nɔ bila, o tɛ se ka nɔ bila mɔgɔ wɛrɛ la.
- Degun: A taamasiɲɛw bɛ se ka ye degunba waatiw la.
- Funteni: Funteni jugumanba, ani tuma dɔw la hali nɛnɛba, o bɛ se ka dɔ fara bana taamasiɲɛw kan.
- Banakisɛw : Hali bana misɛnniw, i n’a fɔ farigan walima sugunɛbaralabana, o bɛ se ka kɛ sababu ye ka MS taamasiɲɛ kɔrɔw bɔ kokura.
- Sigarɛtimin: Sigarɛtimin ye bana juguya sababu ye.
- Witamini D dɛsɛ : Ni witamini D hakɛ dɔgɔyara farikolo la, o fana bɛ se ka nɔ bila a la.
Mun na MS bɛ sɔrɔ? O sababu ye mun ye?
MS sababu tigitigi ma dɔn fɔlɔ, nka a bɛ jate farikolo tangalanw ka bana ye .
N’an y’a fɔ cogo nɔgɔman na, an farikolo tangalan (immune system) bɛ fili ka bin an yɛrɛ farikolo yɔrɔ kɛnɛmanw kan. MS la, o binkanni in bɛ ɲɛsin an ka cɛmancɛ-farikolo-yɔrɔ ma (sɔgɔsɔgɔninjɛ ni kɔkolo).
Ni an b’a fɛ ka tiɲɛ fɔ, lakanani datugulan min bɛ ɲɛgɛnɛsiraw lamini minnu bɛ kunsɛmɛ ni kɔkolo la, o bɛ tiɲɛ. An b'o Weele ko ``Myelin''. A bɛ i n’a fɔ plastiki bɔrɔ min bɛ kuran nɛgɛ lamini. Ni nin bɔgɔdaga in tiɲɛna, farikolojidɛsɛ cikanw tɛ taa ka ɲɛ. O waati de la an tun bɛ kuma taamasiɲɛ minnu kan, olu bɛ bɔ kɛnɛ kan.
Sɛgɛsɛgɛliw y’a jira ko o bɛ se ka kɛ sababu ye ka nɔ bila jamu dɔ la ani sigida fɛnw i n’a fɔ Epstein-Barr banakisɛ.
RRMS bɛ sɔrɔ cogo di?
MS sɛgɛsɛgɛli bɛ se ka kɛ gɛlɛya ye barisa sɛgɛsɛgɛli kelen tɛ yen min bɛ se ka kɛ. Aw ka dɔgɔtɔrɔ bɛna baara kɛ ni aw ka bana taamasiɲɛw ye, aw ka furakɛli tarikuw ani aw ka sɛgɛsɛgɛli caman jaabiw ye walasa ka se ka dantigɛli kɛ.
- MRI scan : O bɛ se ka yɔrɔw ɲini minnu tiɲɛna (joginw/joginw) nɛrɛmuguma (myelin) la kunsɛmɛ ni kɔkolo la.
- Kɔnɔbara basigilen : O ye kɔkoloji tali ye ani ka taamasiɲɛw ɲini minnu bɛ i n’a fɔ MS oligoclonal bands. Olu bɛ se ka hakilina dɔw di ni funu bɛ kunsɛmɛ/kɔkolo la.
- Joli sɛgɛsɛgɛliw : Olu bɛ dɛmɛ ka bana wɛrɛw bɔ kɛnɛ kan minnu taamasiɲɛw ni MS ta bɔlen don.
- OCT scan (Optical Coherence Tomography): Nin ye sɛgɛsɛgɛli ye min tɛ dimi ye, min bɛ ɲɛ kɔfɛla (retina) nɛrɛmugumaw sɛgɛsɛgɛ. A bɛ se ka ɲɛkisɛw tiɲɛni lajɛ ka a sababu kɛ MS ye.
RRMS furakɛcogo jumɛnw ye?
Hali ni fura si ma sɔrɔ fɔlɔ min bɛ se ka MS furakɛ pewu,Furakɛcogo dɔw bɛ yen bi minnu bɛ se ka bana in kunbɛn ani ka bana in taabolo yɛlɛma.
Nin furakɛli ninnu kuntilenna jɔnjɔnw ye :
- Ka dɔ bɔ bana seginni hakɛ la.
- Tiɲɛni kura minnu bɛ kɛ farikolo yɔrɔw la, olu dɔgɔyali.
- A taamasiɲɛw bɛ juguya cogo min na, aw bɛ o sumaya.
Nin fura ninnu bɛ sɔrɔ cogo caman na, i n’a fɔ pikiri, fura minnu bɛ kɛ da la, ani pikiri minnu bɛ kɛ jolisira fɛ, i n’a fɔ saline.
A ka ca a la, fura ninnu bɛ wele ko ``Bana caman sɛmɛntiyalanw'' (DMTs). U bɛ baara kɛ ni bana suguya caman cili ye ani ka tiɲɛni nataw bali farikolo yɔrɔw la. O la , a nafa ka bon kosɛbɛ ka furakɛli daminɛ joona.
Aw ye aw jija ka kuma aw ka dɔgɔtɔrɔ fɛ kɛnɛ kan furakɛli min ka fisa aw ma ani a kɔlɔlɔw. A bɛna fura ɲuman di aw ma.
Ɲɛnamaya bɛna kɛ cogo di ni nin bana in ye?
A bɛnnen don ka siran ani ka jɔrɔ ni aw y’a dɔn ko bana basigilen dɔ bɛ aw la i n’a fɔ nin. Nka tiɲɛ ye ko hali ni MS bɛ i la, i bɛ se ka ɲɛnamaya jan kɛ, ka nisɔndiya ani ka ɲɛtaa sɔrɔ.
Ɲɛtaa caman kɛra MS furakɛli la san damadɔ tɛmɛnenw na, o de y’a to a ka nɔgɔn kosɛbɛ ka bana in taabolo kunbɛn.
Mɔgɔ dɔw kɛlen kɔ ka RRMS kɛ waati dɔ kɔnɔ, u bɛ se ka bana dɔ sɔrɔ, bana taamasiɲɛw bɛ bonya dɔɔni dɔɔni, nka a seginni hakɛ bɛ dɔgɔya. O bɛ wele ko ``Sklerose multiple progressive secondaire (SPMS)``. Nka, ni a furakɛra joona ani ka ɲɛ, o bana in bɛ se ka bali walima ka mɛn.
Aw ka kan ka taa dɔgɔtɔrɔso la tuma jumɛn?
- Ni taamasiɲɛ kuraw bɛ aw la walima ni aw ka bana taamasiɲɛw bɛ ka juguya.
- Ni furakɛli bɛ kɔlɔlɔ lase mɔgɔ ma.
- Ni ɲininkali walima haminanko dɔw bɛ aw la bana in kan.
Take-Home cikan
- RRMS ye MS suguya ye min ka teli ka kɛ, wa a bɛ sɔrɔ a kɔsegincogo ni a yafacogo fɛ.
- A taamasiɲɛw tɛ kelen ye mɔgɔ kelen-kelen bɛɛ la. Yeli gɛlɛyaw, sɔgɔsɔgɔninjɛ ani sɛgɛn kojugu ka teli ka kɛ.
- Hali ni sababu kɛrɛnkɛrɛnnen tɛ o la, a bɛ jate farikolo tangalanw ka bana ye.
- Hali ni bana in tɛ se ka kɛnɛya pewu, furakɛlicogo (DMT) bɛ yen bi minnu bɛ se ka bana in kunbɛn ani ka farikolojidɛsɛ bali.
- Sɛgɛsɛgɛli ni a furakɛli joona nafa ka bon kosɛbɛ siniko la.
- Aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ kɛnɛ kan aw ka bana kan, aw ka furakɛlicogo kan, ani aw bɛ ɲininkali o ɲininkali kɛ.
- Ka ɲɛnamaya kɛ ni bana basigilen ye, o bɛ se ka kɛ hakili gɛlɛya ye. Aw kana siga ka hakili kɛnɛya baarakɛla dɔ ka dɛmɛ ɲini ni aw mago bɛ a la.
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