Kei te mamae koe? Kei te ngoikore ō waewae me ō waewae? Tērā pea he Inclusion Body Myositis (IBM) tēnei!

He uaua ki a koe te pupuri i ngā mea, te pātene i te pātene, te hikoi rānei i ētahi wā? Tērā pea kei te whakaaro koe, "Āe, he mea noa iho tēnei ka puta ina pakeke haere koe." Engari i ētahi wā, kāore ēnei mea i te tino māmā. I tēnei rā, ka kōrero tātou mō tētahi mate onge engari he mea nui kia mōhiotia. Ko te ingoa o tēnei mate ko te 'Inclusion Body Myositis', e mōhiotia ana ko te '(IBM)'.

He aha te 'Inclusion Body Myositis (IBM)'? Kia mārama tātou!

Ki te kī māmā noa, ko te 'Inclusion Body Myositis' he mate e ngoikore haere ana ō uaua, engari kāore e tino mamae. Ka tīmata i muri i te 50 tau te pakeke. Whakaarohia, tera pea ka uaua ki a koe te 'pipi' i tētahi mea iti, ka uaua ki te 'hopu' i tētahi mea, ka hinga rānei ina hikoi noa koe. Koinei ngā tohu tōmua ka kitea pea e koe.

Ko tēnei mate, e kiia nei ko te 'IBM', ka whanake haere mārire i roto i ngā tau maha. Ehara i te mate e morearea ana ki te ora. Ko te tikanga o tēnei, e kore e whakamate i a koe. Heoi, i roto i te wā, ka uaua pea te mahi i ngā mahi o ia rā, ka arahi pea ki tētahi taumata hauātanga. I ētahi wā, kotahi anake te taha o tō tinana ka pāngia nuitia. Tata ki te haurua o te hunga whai mate pēnei ka pāngia pea e ngā 'uauatanga horomi'.

Heoi, kāore anō kia kitea he rongoā mō te IBM. Kaua e manukanuka! Mā te whakaora tinana koe e āwhina ki te pupuri i te kaha o ō uaua mō te wā roa rawa atu.

He pēhea te noa o tēnei āhuatanga 'IBM'?

Ko te Inclusion Body Myositis he mate nō roto i tētahi rōpū mate ngoikore uaua e kiia nei ko te myopathies. Ko ngā myopathies he mate e whakaeke ana, e whakangāwari ana hoki i ō muka uaua. E ai ki ngā rangahau, e pāngia ana e te IBM te 5 ki te 9 o ia miriona pakeke. E toru ngā wā ka nui ake te kitea o tēnei mate i roto i ngā tāne i ngā wāhine (3:1).

He aha ngā tohu o te 'Inclusion Body Myositis (IBM)'? Kia mōhio tātou!

Ka tino pōturi te ngoikore o ngā uaua i puta mai i te IBM. He maha ngā wā ka tīmata i ngā peka. Tērā pea ka kite tuatahi koe i te ngoikore o ō waewae, o ō huha, o ō ringaringa, o ō ringaringa rānei. Whakaarohia pēnei: ​​he uaua ki ētahi tāngata te pātene i te hāte, kāore rānei ā rātou pene e tuhi maeneene. He uaua ki ētahi te piki arawhata, he tūtuki rānei, ka hinga i a rātou e hikoi noa ana.

I te kaha haere o ngā tohu, ka kite pea koe i ngā mea penei:

• Ka ngoikore haere ngā uaua o ngā ringa, o ngā waewae, o ngā pakihiwi, o te hope, o ngā nikau, me ngā maihao. Whakaarohia, kāore e taea e koe te hiki i ngā mea i ngāwari te hiki i mua, ā, he uaua ki a koe te whakatika ake i te tūru.
• Te ngoikore o ngā uaua o te kaki, o te korokoro rānei. Ka uaua pea te pupuri i te upoko kia tū tika, ka uaua hoki te horomi kai, ā, ka piri pea te kai.
• E kitea mārama ana te ngoikore o ngā uaua. Ko te tikanga kua mimiti ngā uaua, kua tino angiangi.
• He mamae uaua ngawari, he maha tonu (`myalgia`). Heoi, kāore tēnei mamae e pā ki te katoa, ā, ahakoa ka pā, ehara i te mea tino kino.

Hei tauira, whakaarohia he hoa tōu ko Sunil tōna ingoa. Kāore ia i te kaha ki te pupuri tika i tana kapu tī mō tētahi wā, ka paheke tonu mai i tōna ringa. Ina haere ia ki te pānui i te nūpepa, ka rite tōna ringa ki te wiri. I te tuatahi, i whakaaro ia he ngenge noa iho. Engari i muri mai, ka mōhio ia he tohu tōmua pea tēnei o te 'IBM'.

He aha i puta ai tēnei 'Inclusion Body Myositis (IBM)'? He aha te take?

Ina hoki, ko tēnei āhuatanga e kiia nei ko te 'Inclusion Body Myositis' he 'idiopathic'. Arā, te āhua nei ka puta mai, kāore he take motuhake. Pērā i ētahi atu momo 'myositis', i tēnei take, ko te mumura roa i roto i ngā uaua ('mumura mau tonu') te tino take o te ngoikore o te uaua. Heoi, kāore anō kia mōhiotia e ngā kairangahau te take tino puta ai tēnei mumura. E whakapae ana rātou he raruraru pea kei te pūnaha ārai mate ('mate autoimmune') . Arā, ko ngā pūtau e tiaki ana i tō tātou tinana ka whakaeke hē i ō tātou ake pūtau uaua.

He hononga anō hoki ngā 'tinana whakauru' ki te 'IBM'. He puranga pūmua rerekē ēnei e whakatakotoria ana ki roto i ngā pūtau uaua. Ka puta pea i te mate huaketo, i te kino o ngā pūtau, i ngā whakarerekētanga ira rānei . Ka kitea anō hoki ēnei 'tinana whakauru' i roto i ngā mate neurodegenerative pērā i te 'ALS'. Ka taea e rātou te whakararuraru i te mahi noa o ngā pūtau.

Te rerekētanga i waenga i te 'Inclusion Body Myopathy' me te 'Inclusion Body Myositis'

I ētahi wā, ka kiia hoki te 'Inclusion Body Myositis' ko te 'sporadic inclusion body myositis (sIBM)'. Ko te tikanga o te 'Sporadic' he mea tupu noa iho, kāore rānei he take motuhake. Hei wehewehe i tēnei mai i ngā āhuatanga rite e tuku iho ana. Ko ngā mea e tuku iho ana ka kiia ko te 'hereditary inclusion body myopathies (hIMB)'. Ina kī tātou he 'inclusion body myopathies', e rua ēnei momo e pā ana. Kei te kōrero tātou inaianei mō te 'sIBM' e puta noa ana.

Me pēhea te tātaritanga o te 'Inclusion Body Myositis'? He aha ngā whakamātautau e mahia ana?

Hei kimi mēnā kei a koe te IBM, ka pātai tuatahi te tākuta ki a koe mō ō tohumate, ā, ka tirotirohia hoki ō uaua. Ka rite pea ngā tohumate o te inclusion body myositis ki ērā o ētahi atu mate, pērā i te polymyositis me te myasthenia gravis. Ka rapu tō tākuta i ngā mea motuhake pēnei i:

• Ko ēhea ngā uaua e pāngia ana? (hei tauira, i roto i ngā maihao, i ngā huha rānei?)
• Kotahi anake te taha o te tinana e pāngia nuitia ana?
• E kitea mārama ana te memeha haere o ngā uaua?
• E hia ōu tau i te tīmatanga o ngā tohu? (I muri i te 50 tau te pakeke te nuinga o te wā)

Kātahi ka taea te whakahaere i ētahi whakamātautau hei "whakakore" i ētahi atu āhuatanga, pēnei i:

• Whakamātautau Creatine Kinase (CK): Mā tēnei ka ine i te taumata o tētahi whākōkī motuhake i roto i te toto. Ka piki ake pea tēnei taumata `CK` ina pakaru ngā uaua.
• Ngā whakamātautau toto mō ngā huaketo me ngā mate autoimmune rerekē.
• Electromyogram (EMG): Ka inehia te ngohe hiko i roto i ō uaua. Mā te wero i ngā ngira iti ki roto i ngā uaua.
• Rangahau Ārahi Io (NCS): Ka ine tēnei i te tere o te haere o te hiko mā roto i ngā io (ngā io nekeneke) e whakahaere ana i ō uaua.

Whakamātautau koiora uaua

Ko te huarahi pai ki te whakaū mēnā kei a koe te mate pukupuku whakauru-tinana ko te tango i tētahi wahi iti o te kiko (he koiora) mai i te uaua e pāngia ana. Ka tirohia e te tohunga mate tēnei tauira kiko i raro i te karuārai. Mena kei a koe te mate pukupuku IBM, ka taea e ia te kite i ngā tinana whakauru (ngā pūmua rerekē, ngā mirumiru, ngā vacuole rānei) i roto i te tauira.

He rongoā whai hua kei te wātea mō te 'Inclusion Body Myositis'?

Engari, kāore he rongoā whai hua mō te inclusion body myositis. He rerekē ki ētahi atu mate mumura me ngā mate pūnaha ārai mate, kāore e pāngia e ngā corticosteroids, e ngā rongoā ārai mate rānei.

Kaua e mutu te tumanako! He mea nui te whakaora tinana me te whakakori tinana auau hei pupuri i te kaha o ō uaua mō te wā roa. Ka āwhina te whakakori tinana ki te ārai i te ngoikore o ngā uaua.

I te whanaketanga o te mate, ā, ka uaua haere te mahi i ngā mahi o ia rā, me ako pea koe i ngā huarahi hou hei mahi i ngā mea. Koinei te wāhi ka taea e te rongoā mahi te āwhina. Hei tauira, ka ako pea rātou i a koe ki te whakamahi i ngā taputapu maha hei āwhina i a koe ki te kakahu, ki te kai, me te tuhituhi. Me ako pea ētahi tāngata ki te whakamahi i te tūru wīra. Mena he uaua ki a koe te horomi, ka taea e te Tohunga Kōrero-Reo (SLP) te āwhina. Ka taea e rātou te ako i a koe ki te horomi haumaru me te mahi i ngā mahi horomi.

Mena kei a au te 'Inclusion Body Myositis', he aha taku e tumanako ai?

Ki te mea kei a koe te 'IBM', ka piki haere mārire. E ai ki taku kōrero i mua,Kāore tēnei e pā ki tō roanga o te ora. Heoi anō, tera pea ka pā ki te kounga o tō oranga. Me whakawhirinaki pea koe ki ētahi atu, me ako rānei i ngā huarahi hou mō te mahi i ngā mea. Kāore te nuinga o te tangata e ngaro te kaha ki te hikoi katoa, engari ko ētahi ka hiahia pea ki te tūru wīra i muri i te 10-15 tau.

Me pēhea taku tiaki i a au anō i a au e ora ana me te mate pāwera tinana whakauru?

Ka roa koe e noho tahi ana me te 'Inclusion body myositis', ā, ka uaua pea i roto i te wā. Ko te huarahi pai ki te whakatau i tēnei ko te whakarite i tētahi mahere roa hei tiaki i tō hauora tinana me tō hauora hinengaro. Ko te tikanga o tēnā ko te mahi tonu i ngā tikanga iti hei āwhina i a koe kia ora tonu. Hei tauira:

• Me haere tonu tō kaupapa whakakori tinana. Tērā pea kei roto koe i te whakaora tinana, kua huri rānei koe ki tētahi kaupapa whakakori tinana kāinga. Mā te haere tonu i tēnei mahi ka āwhina i a koe kia kaha tonu ō uaua.
• Whai i te "āhua noho hauora." Ki te kai pai koe, ki te moe pai, ki te whakahaere i te ahotea, ā, ki te pupuri tonu i ō whanaungatanga nui, ka pai ake tō wairua whānui.
• Hono atu ki ngā rōpū tautoko. Ka taea e koe te whiwhi i te kaha hinengaro me ngā tohutohu whai hua mai i ētahi atu tāngata kua pā ki a koe, kei te pā rānei ki a koe. He mea pai hoki te whakaaro "Ehara i te mea ko au anake kei te pā ki tēnei."
• Tirohia ngā urutaunga i te kāinga me te mahi. He maha ngā taputapu āwhina nekenekehanga me ngā taputapu āwhina hei āwhina i te hunga hauā tinana ki te whakahaere i ngā mahi o ia rā.
• Tirohia tō tākuta i ia wā, i ia wā. Me whakapā atu ki tō tākuta. Mēnā ka kite koe i ētahi tohu hou, pērā i te uaua ki te horomi, ka kino haere rānei tētahi tohu o mua, me kōrero tonu atu ki tō tākuta.
• Tirohia ngā whakamātautau haumanu. Kei te rapu tonu ngā kairangahau i ngā maimoatanga hou hei āwhina i te mate myositis tinana whakauru. Ka taea hoki e koe te whai wāhi atu ki ēnei whakamātautau.

Ko tēnei mate, e kiia nei ko te 'Inclusion body myositis', ka puta pinepine i waenganui o te ora, i te wā kāore he tumanako. Kāore he tangata e tumanako ana ka pāngia ohoreretia e tētahi mate kāore e taea te rongoā, e haere tonu ana. He uaua pea te aro atu me te whakamārama ki te hunga e aroha ana ki a koe, inā koa kāore anō rātou kia rongo mō tēnei mate i mua.

Engari kia maumahara, he mate tino puhoi te tipu o tēnei. Nō reira, he nui te wā hei whakaaroaro mō ngā huringa kei mua, hei whakatikatika hoki. Kāore e taea e tetahi te kī me pēhea te pānga o tēnei ki a koe. Engari,Mēnā he huarahi hihiri, he maha ngā mea ka taea e koe te mahi hei pupuri i tō hauora me tō oranga whānui i ngā tau e haere ake nei.

Ngā mea tino nui hei maumahara mā tātou (Karere hei tango ki te kāinga)

Āe, kua maha ā tātou kōrero mō te 'Inclusion Body Myositis (IBM)'. Hei whakamutunga, anei ngā mea tino nui hei maumahara māu:

• He mate ngoikore uaua haere tonu te IBM, ā, ka kitea whānuitia i muri i te 50 tau te pakeke. He ngawari te mamae, engari i roto i te wā ka pā ki ngā mahi o ia rā.
• Kāore he rongoā mō tēnei , engari mā te whakaora tinana me te whakakori tinana ka āwhina i te pupuri i te kaha o te uaua mō te wā roa rawa atu.
• Ko ētahi o ngā tohu ko te uaua ki te hopu i ngā mea, te tūtuki i te waewae i te wā e hikoi ana, me te uaua ki te horomi kai .
• Kāore i te mōhiotia te tino take (‘idiopathic’), engari he raruraru pea kei te pūnaha ārai mate.
• Ka whakaūtia te mate e te koiora uaua anake.
• Ehara tēnei i te mea mōrearea ki te ora , engari ka pā kino ki te kounga o te ora.
• He mea tino nui kia noho pai, kia whai i ngā tohutohu a te tākuta, kia whiwhi hoki i te tautoko e tika ana.

Mena kei te pāngia koe, tetahi atu rānei e mōhio ana koe e ēnei tohu, he pai ake te rapu tohutohu hauora. Kia maumahara, ehara i te mea ko koe anake, he tokomaha ngā tāngata ka taea te āwhina!

` Ngoikoretanga o te uaua, te mate IBM, te whakaora tinana, ngā mate uaua, te hauora o te kaumātua, ngā uauatanga horomi, ngā mate pūnaha io