PPMS (Sclérose multiple progressive primaire) ye mun ye? Aw ka kan ka min dɔn ni aw ka bana taamasiɲɛw bɛ ka juguya dɔɔni dɔɔni

Yala taama ka gɛlɛn i ma tuma dɔw la, i senw bɛ sɔgɔsɔgɔ, walima i bɛ sɛgɛn tuma bɛɛ kun tɛ min na wa? Yala aw fana b’a miiri ko nin taamasiɲɛ ninnu tɛ daminɛ yɔrɔnin kelen, nka u bɛ bonya dɔɔni dɔɔni waati tɛmɛnen kɔfɛ wa? O tuma na fɛ, a nafa ka bon kosɛbɛ aw ka aw janto nin bana in na min bɛ wele ko PPMS , an bɛ kuma min kan bi. Hali n’a y’a sɔrɔ nin ye barokun gɛlɛn ye dɔɔnin, an bɛna kuma a kan cogo nɔgɔman na, cogo la min bɛ se ka faamuya.

PPMS ye mun ye nɔgɔya la?

Okey, fɔlɔ an k’a lajɛ PPMS ye min ye. PPMS daɲɛ kɔrɔ ye ` Sclerose multiple progressive primaire` ye . Nin ye bana suguya dɔ ye `Sclerose multiple` ( MS ).

N’an y’a fɔ cogo nɔgɔman na, Sclerose Multiple (MS) ye bana ye min na an farikolo tangalan , o ye farikolo tangalan ye min b’an tanga banaw ma, o bɛ fili ka bin an yɛrɛ ka farikolojidɛsɛ kan. O bɛ kunnafoniw taabolo tiɲɛ kunsɛmɛ, kɔkolo ani farikolo tɔ cɛ.

Sisan, MS suguya belebele fila bɛ yen.

1. MS min bɛ segin-ka-bɔ (RRMS): O ye waati ye ni bana taamasiɲɛw bɛ barika sɔrɔ ka juguya (an b’o wele ko `segin`), o kɔfɛ waati dɔ tɛmɛnen kɔfɛ, a taamasiɲɛw bɛ kɛnɛya walima ka ban pewu (`yafa`). A bɛ i n’a fɔ sanji, a bɛ barika sɔrɔ, a bɛ bin, ka sɔrɔ ka segin ka na tugun.

2. Primary Progressive MS (PPMS): An bɛ kuma sugu min kan bi, n’o ye PPMS ye, o ye maana wɛrɛ ye. Yan, bana taamasiɲɛw tɛ barika bɔ ka sɔrɔ ka ban. O nɔ na, ​​a taamasiɲɛw bɛ juguya dɔɔni dɔɔni waati tɛmɛnen kɔfɛ. I n’a fɔ sanjiba, a bɛ jigin dɔɔni ka sɔrɔ ka jigin tiɲɛ na. Tuma dɔw la, bana taamasiɲɛw bɛ se ka wuli, nka o man teli ka kɛ.

MS banabagatɔ 10% ɲɔgɔn bɛ nin MS suguya in sɔrɔ, o min bɛ wele ko PPMS.

PPMS taamasiɲɛ kunbabaw ye jumɛnw ye?

PPMS la, a taamasiɲɛw tɛ se ka ye kosɛbɛ a daminɛ na. Nka waati tɛmɛnen kɔfɛ, u bɛ juguya ka taa a fɛ. Nin taamasiɲɛ ninnu bɛ se ka ɲɔgɔn ta mɔgɔ kelen-kelen bɛɛ la. Aw bɛ se ka taamasiɲɛ kunbaba minnu sɔrɔ, an ka olu lajɛ.

Mun na PPMS bɛ yiriwa? O sababu ye mun ye?

Tiɲɛ na, MS walima PPMS sababu tigitigi ma dɔn hali bi, nka ɲininikɛlaw dalen b’a la ko a ye fɛnw faralen ye ɲɔgɔn kan.

• Jɛnɛya : Ni MS bɛ aw ka denbaya kɔnɔ mɔgɔ dɔ la, farati fitini bɛ aw fana na. Nka o ye farati fitinin ye kosɛbɛ. O kɔrɔ ye ko a ka c’a la, denmisɛnw tɛna a sɔrɔ dɔrɔn bawo a tun bɛ u bangebagaw fɛ.
• Lamini koɲɛw: A bɛ da a la ko banakisɛ dɔw walima banakisɛ dɔw sɔrɔli fana bɛ nɔ dɔ bila MS sɔrɔli la.
• Banakisɛfagalanw ka baarakɛcogo : I n’a fɔ an y’a fɔ cogo min na ka tɛmɛ, min bɛ kɛ yan, o ye ko an yɛrɛ ka farikolo tangalanw bɛ an ka farikoloɲɛnajɛw lamini lakanani datugulan (`myelin sheath`) tiɲɛ . O tiɲɛni bɛ cikanw lasecogo tiɲɛ nɛrɛmuguma fɛ.

PPMS bɛ sɔrɔ cogo di?

Sɛgɛsɛgɛli kelen tɛ yen min bɛ se ka PPMS dafa. Dɔgɔtɔrɔ bɛ bana in sɛgɛsɛgɛ ni a bɛ i ka bana taamasiɲɛw, furakɛli tarikuw ani sɛgɛsɛgɛli caman jaabiw sɛgɛsɛgɛ ka ɲɛ. O kɔrɔ ye ko o ye taabolo ye min bɛ waati dɔ ta.

Sɛgɛsɛgɛli kunbaba minnu bɛ kɛ, olu dɔw filɛ nin ye.

A ka ca a la, PPMS bɛ sɔrɔ san 40 ni san 50 cɛ, nka o bana bɛ se ka kɛ san o san.

PPMS furakɛcogo jumɛnw ye?

Fura si ma sɔrɔ PPMS la fɔlɔ. Nka, furakɛli dɔw bɛ yen minnu bɛ se ka bana in taabolo sumaya ani ka ɲɛnamaya nɔgɔya ni a taamasiɲɛw kunbɛnni ye.

Furakɛli bɛ se ka tila yɔrɔba fila ye:

1. Banaw ladilancogo (DMT) .

Nin fura ninnu bɛ baara kɛ ni bana in bɛ farikolojidɛsɛ minnu lase mɔgɔ ma, olu bɛ dɔ bɔ u la ani ka bana juguya hakɛ dɔgɔya. DMT kunbaba minnu dabɔra PPMS kama, olu dɔ ye ocrelizumab (Ocrevus®) ye . Nin fura in bɛ se ka dɛmɛ don ka bana taamasiɲɛw juguya hakɛ kunbɛn, fo ka se hakɛ dɔ ma.

2. Taamaʃyɛnw kunbɛncogo

O nafa ka bon kosɛbɛ. Furakɛli suguya caman bɛ kɛ walasa ka bana taamasiɲɛw kunbɛn minnu bɛ nɔ bila don o don ɲɛnamaya la.

• Farikoloɲɛnajɛ : Farikoloɲɛnajɛ ni furakɛli wɛrɛw bɛ lafiya di farikolo gɛlɛyaw ma, fanga dɔgɔyali ani balansi gɛlɛyaw ma.
• Baarakɛcogo: A bɛ fɛɛrɛw ni minɛnw kalan walasa ka don o don baara nɔgɔya (misali la, finidoncogo, tobili).
• Fura: Aw ka dɔgɔtɔrɔ bɛ se ka fura suguya caman di aw ma bana taamasiɲɛw kama i n’a fɔ sugunɛ kunbɛnni gɛlɛyaw, dimi, sɛgɛn ani degun .

Aw ka dɔgɔtɔrɔ bɛna furakɛli bolodacogo dɔ labɛn min bɛ bɛn aw ma. Sani aw ka furakɛli suguya o suguya daminɛ, aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ kɔlɔlɔ minnu bɛ se ka sɔrɔ.

Aw bɛ mun makɔnɔ ni aw bɛ balo ni PPMS ye?

PPMS ye bana ye min bɛ se ka nɔba bila aw ka don o don ɲɛnamaya la. Ni bana taamasiɲɛw bɛ ka juguya, aw bɛ se ka fɛn dɔw Changer walasa ka aw lakana ani ka aw yɛrɛ tanga kasaara ma.

Misali la, a bɛ se ka kɛ ko i ka kan ka baara kɛ ni taamakɛlan ye walima ni wotoronin ye ni taama ka gɛlɛn i ma. Aw k’aw hakili to a la ko baara kɛli ni ninnu ye, o tɛ dɛsɛ ye, o ye fɛɛrɛ ye min b’aw ka yɛrɛmahɔrɔnya sabati ani k’aw dɛmɛ ka fɛnw kɛ aw ka kan ka minnu kɛ.

Ka ɲɛnamaya kɛ ni bana basigilen ye i n’a fɔ nin, o bɛ se ka i tɔɔrɔ farikolo ni hakili ta fan fɛ. A bɛnnen don ka dusukasi ni jɔrɔ. Nin waati suguw la, ka kuma hakili kɛnɛya ladilikɛla dɔ fɛ ani ka i dusukunnataw fɔ mɔgɔ ye i dalen bɛ min na, o bɛ se ka kɛ i lafiyaba ye.

PPMS tɛ nɔ bila mɔgɔ ka ɲɛnamaya la k’a ɲɛsin a yɛrɛ ma, nka bana in gɛlɛyaw bɛ se ka nɔ bila ɲɛnamaya kɛcogo la.

Tuma jumɛn na ne ka kan ka taa dɔgɔtɔrɔso la?

Ni PPMS bɛ aw la, a nafa ka bon aw ka to ka taa dɔgɔtɔrɔso la tuma bɛɛ. Aw bɛ dɔgɔtɔrɔ ka ladilikan ɲini, kɛrɛnkɛrɛnnenya la ni:

• Ni aw ka bana taamasiɲɛw juguyara fo u bɛ nɔ bila aw ka don o don baaraw la.
• Ni farilajidɛsɛ bɛ yen, dimi bɛ to sen na walima senkɔni na.
• Ni aw binna ka jogin ka a sababu kɛ aw ka balansi tiɲɛna, aw bɛ taa ETU (Emergency Treatment Unit) la joona.
• Ni furakɛli kɔlɔlɔw ka jugu.

Ɲininkali minnu ka kan ka kɛ dɔgɔtɔrɔ la

• Yala PPMS walima MS suguya wɛrɛ bɛ ne la wa?
• Ne bɛ se ka ne ka bana taamasiɲɛw kunbɛn cogo di?
• Yala ne mago bɛ farikoloɲɛnajɛ furakɛli la walima baarakɛcogo furakɛli la wa?
• Aw bɛ fura minnu fɔ, olu kɔlɔlɔ jumɛnw bɛ yen?
• Yala ne mago bɛ mobili-dɛmɛnan na i n’a fɔ wotoronin wa?