Ua ʻoʻoleʻa anei kou kino me ke kumu ʻole? E kamaʻilio kākou e pili ana i ka Stiff Person Syndrome!

Ke manaʻo nei ʻoe i kekahi manawa e ʻūlū ana kou mau ʻiʻo me ka ʻike ʻole ʻia, a i ʻole e ʻūlū nui ana kou mau ʻiʻo? I kekahi manawa hiki ke hana ʻia ke lohe ʻoe i kahi leo nui a i ʻole e kuʻi kekahi iā ʻoe. Inā hana pinepine ʻia kēia mau mea, he manaʻo maikaʻi e nānā i ia mea. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi kakaikahi loa e hiki ai ke hana i nā hōʻailona like. ʻO ia ka Stiff Person Syndrome (SPS) .

He aha ka Stiff Person Syndrome?

I ka ʻōlelo maʻalahi, ʻo Stiff Person Syndrome (SPS) kahi maʻi neurological kakaʻikahi . Hana ia i ka wā e hoʻouka hewa ai ka ʻōnaehana pale o ko mākou kino, ka mea e pale ai iā mākou mai nā maʻi, i kā mākou mau hunaola nerve olakino ponoʻī. He maʻi autoimmune ia. ʻO kēia ke kumu o ka paʻakikī a ʻoʻoleʻa paha o nā ʻiʻo i loko o kou ʻōpū, ʻoiai kou ʻōpū, umauma, a me ke kua. I ka hala ʻana o ka manawa, hiki i kēia ʻoʻoleʻa a me nā spasms ke laha i kou mau wāwae a me nā ʻiʻo ʻē aʻe. Hiki i kēia ke paʻakikī i ka hele wāwae, e hāʻule pinepine ai ʻoe, a ʻoi aku ka nui o kou ʻeha.

Ua kapa ʻia kēia ma mua ʻo "stiff man syndrome," akā ua hoʻololi ʻia kēlā inoa i kēia manawa no ka mea hiki i kēia maʻi ke hoʻopilikia i kekahi, me ka nānā ʻole i ka makahiki a i ʻole ke kāne.

Hiki ke paʻakikī iki ka ʻike ʻia ʻana o kēia maʻi. Akā, e hana kāu hui lapaʻau i kahi hoʻolālā lapaʻau e kūpono iā ʻoe a me kāu mau hōʻailona. Hiki ke ʻokoʻa kēia mai kēlā kanaka a kēia kanaka. ʻO ka mea nui loa, ʻo ia ke ʻike pinepine i kāu mau kauka, e loaʻa ke kākoʻo āu e pono ai, a e hoʻāʻo e noho olakino.

He aha nā hōʻailona o ka Stiff Person Syndrome (SPS)?

ʻElua mau hōʻailona nui o kēia maʻi:

• ʻOʻoleʻa a paʻakikī paha nā ʻiʻo.
• ʻEha nā ʻiʻo ʻeha.

ʻOiai hiki ke hoʻomaka kēia mau hōʻailona i kēlā me kēia makahiki, ʻoi aku ka maʻamau ma waena o nā makahiki 30 a me 40 .

Hiki i nā hōʻailona o ka Stiff Person Syndrome ke laha i nā ʻāpana ʻē aʻe o ke kino a e ʻoi aku ka ʻino i ka hala ʻana o ka manawa. No kekahi poʻe, hiki ke hala i nā mahina a i nā makahiki e ʻike ʻia ai nā hōʻailona. No kekahi poʻe, hiki ke noho like nā hōʻailona no nā makahiki. No kekahi poʻe, hiki ke lilo mālie nā hōʻailona i mea ʻino a hiki ʻole ke hana i nā hana o kēlā me kēia lā.

ʻOʻoleʻa o nā ʻiʻo

ʻO ka pinepine, ʻo ka hōʻailona mua āu e ʻike ai me ka Stiff Person Syndrome ʻo ia ka ʻoʻoleʻa o nā ʻiʻo i loko o ke kino . ʻO ia hoʻi ma nā wahi e like me ka ʻōpū, ka umauma, a me ke kua. Hiki i kēia ʻoʻoleʻa ke hōʻeha a me ka ʻoluʻolu ʻole. Hiki i kēia mau hōʻailona ke hele mai a hele aku me ke kumu ʻole. Hiki i ke kūlana ke hoʻopilikia i nā lima a me nā wāwae. I ka piʻi ʻana o ka ʻoʻoleʻa, hiki i kekahi poʻe ke hoʻomohala i nā kūlana kūpono ʻole e paʻakikī ai ka hele a neʻe paha.

Nā ʻūmiʻi ʻiʻo

ʻO nā ʻeha ʻeha o nā ʻiʻo kekahi hōʻailona nui o kēia maʻi. Hiki i kēia ke hoʻopilikia i ke kino holoʻokoʻa, a i ʻole hiki ke kau ʻia i kahi kikoʻī. Hiki i kēia mau ʻeha ke mau no kekona, mau minuke, a i ʻole nā ​​hola. E noʻonoʻo, i kou kū wale ʻana, ua paʻa koke kou wāwae a i ʻole kou kua a ʻūlū. He ʻike ʻeha loa ia.

He aha nā kumu o ka Stiff Person Syndrome (SPS)?

Aia kekahi mau kumu e hiki koke mai ai nā hōʻailona e like me ka ʻūlū ʻana o nā ʻiʻo:

• He walaʻau koke a leo nui paha. E noʻonoʻo inā ʻoe e hele ana ma ke alanui a kani koke ke kaʻa i kona pepeiaohao, a i ʻole inā hāʻule kekahi mea ma ka home i ka honua me ka pahū nui.
• Hoʻopā kino a hoʻoulu paha. Inā hoʻopā koke kekahi iā ʻoe, pā iā ʻoe.
• Nā loli o ka mahana, ʻoi aku hoʻi nā wahi anuanu. Inā hele koke ʻoe i kahi anu, a inā hāʻule ka wai anuanu ma luna o kou kino.
• Nā hanana hoʻoluhi. Nā manawa hoʻonāukiuki a weliweli hoʻi.

Ma muli o ka hiki ʻana mai o kēia mau ʻiʻo spasms i nā manawa i manaʻo ʻole ʻia, ʻike kekahi poʻe me ka Stiff Person Syndrome i ka hopohopo a me ka agoraphobia . ʻO ka Agoraphobia kahi makaʻu nui i ka hele ʻana i nā wahi piha kanaka, ka hele ʻana i waho, a i ʻole ka haʻalele ʻana i ka home. No ka mea, i ka manawa ma waho, he paʻakikī ke pakele i kēia mau mea hoʻonāukiuki.

He aha ke kumu o ka Stiff Person Syndrome (SPS)?

ʻAʻole maopopo i nā kānaka noiʻi ke kumu o kēia maʻi, akā manaʻoʻiʻo lākou he maʻi autoimmune ia, ʻo ia hoʻi, hoʻouka ka ʻōnaehana pale ponoʻī o ko mākou kino i nā ʻōnaehana olakino.

Ua hōʻike ʻia e ka noiʻi he pili nā antibodies . He nui ka poʻe me Stiff Person Syndrome i loaʻa nā antibodies e kūʻē i kahi enzyme i kapa ʻia ʻo Glutamic Acid Decarboxylase (GAD) . Kōkua kēia enzyme (GAD) i ka hana ʻana i ka neurotransmitter gamma-aminobutyric acid (GABA) . Kōkua kēia neurotransmitter (GABA) i ka hoʻomalu ʻana i ka hana o nā ʻiʻo.

Akā, ʻaʻole maopopo loa i nā kānaka noiʻi pehea e pili ai ka enzyme `(GAD)` i ka ulu ʻana a me ka holomua ʻana o ka Stiff Person Syndrome. ʻO kahi mea e hoʻomanaʻo ai, ʻo ka loaʻa ʻana o nā antibodies `(GAD)` i loko o kou kino, ʻaʻole ia he manaʻo he Stiff Person Syndrome kou. Loaʻa paha i kahi hapa liʻiliʻi o ka heluna kanaka kēia mau antibodies `(GAD)` i loko o ko lākou kino me ka ʻole o nā hopena maikaʻi ʻole.

Ma waho aʻe o GAD, ua ʻike ʻia nā antibodies ʻē aʻe e like me ka glycine receptor, amphiphysin, a me DPPX (dipeptidyl peptidase-like protein 6) e pili ana i ka maʻi. Eia kekahi, ʻaʻole paha i loaʻa i kekahi mau maʻi kekahi o kēia mau antibodies. Ke hoʻomau nei ka noiʻi hou aku e hoʻoholo i nā antibodies ʻē aʻe e pili ana.

He aha nā kumu pilikia no ka Stiff Person Syndrome (SPS)?

ʻOi aku ka pinepine o ka maʻi kanaka paʻakikī i nā wahine i ʻelua manawa . Hiki nō hoʻi ke hana pū me nā kūlana autoimmune ʻē aʻe. Eia kekahi laʻana:

• ʻAno 1 diabetes
• ʻO ka maʻi thyroid autoimmune
• ʻO ka ʻili ʻili
• ʻO ka anemia ʻino
• Maʻi Celiac

Pehea ka maʻamau o ka Stiff Person Syndrome (SPS)?

He maʻi laha ʻole kēia. Ua ʻōlelo ʻia hoʻokahi wale nō i loko o ka miliona o ka poʻe i loaʻa i kēia maʻi. ʻO ia hoʻi, he maʻi laha ʻole loa ia.

Pehea e ʻike ʻia ai ka Stiff Person Syndrome (SPS)?

Hoʻomaopopo ke kauka i kēia maʻi ma o nā hōʻailona kikoʻī, nā hoʻokolohua, a me nā hoʻāʻo. E nīnau lākou iā ʻoe e pili ana i kāu mau hōʻailona, ​​​​hana i kahi hoʻokolokolo kino, a hana i kahi hoʻokolokolo neurological.

Inā kānalua ke kauka i ka Stiff Person Syndrome, hiki iā lākou ke hana i nā hoʻokolohua e like me:

• Hoʻāʻo koko antibody: Kōkua kēia i ka nānā ʻana i ke alo o nā antibodies i (GAD) (a i ʻole nā ​​​​antibodies pili ʻē aʻe) a e kāpae i nā kūlana olakino ʻē aʻe.
• Electromyography (EMG): Ke ana kēia i ka hana uila o kou mau ʻiʻo. Hiki i kēia ke kōkua i ka kāpae ʻana i nā kumu ʻē aʻe o kāu mau hōʻailona.
• ʻO ke kī ʻana o ka lumbar (spinal tap): Ma kēia hoʻāʻo, hoʻohana ke kauka i kahi nila e lawe i kahi hāpana wai mai kou kaula iwi kuamoʻo a hoʻāʻo iā ia no nā antibodies i GAD. He mea nui hoʻi kēia e kāpae i nā kūlana ʻē aʻe.

Hiki ke paʻakikī ke ʻike i ka Stiff Person Syndrome no ka mea he mea kakaikahi ia a hiki ke like kona mau hōʻailona me nā maʻi autoimmune ʻē aʻe, e like me ka ankylosing spondylitis a me ka multiple sclerosis.

Aia kekahi mau ʻano o ka Stiff Person Syndrome (SPS)?

Aia kekahi mau ʻano like ʻole o kēia maʻi:

• ʻO ka maʻi kanaka paʻakikī maʻamau: ʻO kēia ke ʻano maʻamau. Hoʻopili pinepine ʻia me nā antibodies GAD, akā ua ʻike ʻia e ka noiʻi ua pili pū kekahi mau antibodies.
• Nā ʻano like ʻole o ka maʻi kanaka paʻakikī:Ma lalo o kēia, aia nā ʻano like ʻole e hoʻopilikia wale i nā ʻāpana kikoʻī o ke kino, a i ʻole e hōʻike ana i nā hōʻailona hou aʻe e like me ka nalowale o ka mana i ka wā e hele ana (`ataxia`).
• ʻO ka encephalomyelitis holomua me ka rigidity a me ka myoclonus (PERM): ʻO ka PERM kahi ʻano ʻoi aku ka koʻikoʻi o ka stiff person syndrome. Hiki iā ia ke hoʻopau i ka ʻike, nā pilikia neʻe maka, ataxia, a me ka hana pono ʻole o ke kanaka. Pono ka hana pono ʻole o ke kanaka i ka haukapila no ka poʻe me PERM.

Pehea e mālama ʻia ai ka Stiff Person Syndrome (SPS)?

ʻElua mau ʻano nui no ka mālama ʻana i kēia:

• Nā lāʻau lapaʻau a me nā mālama ʻana e kāohi i nā hōʻailona.
• ʻO ka Immunotherapy, a i ʻole ka lāʻau hoʻololi maʻi.

ʻOkoʻa nā koho lapaʻau ma muli o kāu mau hōʻailona. ʻO ka pahuhopu nui o ka lapaʻau ʻana, ʻo ia ke kāohi i ke ʻano o ka hopena o kāu mau hōʻailona iā ʻoe a hoʻomaikaʻi i kou neʻe ʻana a me ka ʻoluʻolu.

Hiki i kāu hui lapaʻau ke komo pū me kekahi mau loea, e like me:

• Nā neurologists, ʻoi aku hoʻi nā neuroimmunologists.
• Nā mea hoʻōla hana a me nā mea hoʻōla kino.
• Nā loea lapaʻau kino a me ka hoʻoponopono hou ʻana.
• Nā mea lapaʻau ʻōlelo.
• Nā loea olakino noʻonoʻo, no ka laʻana nā loea noʻonoʻo.

Nā lāʻau lapaʻau a me nā lāʻau lapaʻau

Hiki i nā lāʻau lapaʻau e like me kēia ke kōkua i ka hōʻemi ʻana i ka ʻoʻoleʻa o nā mākala, ka ʻoʻoleʻa, a me nā ʻeha ʻeha o nā mākala:

• ʻO Benzodiazepines: He papa lāʻau lapaʻau kēia i hoʻohana ʻia e mālama i nā ʻano maʻi like ʻole, me ka hopohopo, ka maʻi epilepsy, a me ka insomnia. Hoʻopilikia lākou i ka hōʻailona neurotransmitter (GABA). Hoʻomaopopo pinepine nā kauka i ka diazepam ma ke ʻano he lāʻau lapaʻau mua no ka Stiff Person Syndrome.
• Nā lāʻau hoʻomaha ʻiʻo: Hiki i nā lāʻau lapaʻau e like me Baclofen ke kōkua i nā ʻūmiʻi ʻiʻo. Hoʻomaha lākou i nā ʻiʻo a hōʻemi i ka ʻoʻoleʻa.
• Nā lāʻau lapaʻau ʻeha neuropathic: ʻO nā lāʻau lapaʻau e like me gabapentin a me pregabalin e hoʻopilikia pū i ka hōʻailona GABA a kōkua i nā hōʻailona.

ʻO nā lāʻau lapaʻau ʻē aʻe e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona:

• Hoʻōla kino a i ʻole ka hoʻōla hana.
• Lomilomi.
• Hydrotherapy (lāʻau lapaʻau wai).
• Hoʻōla wela.
• ʻAkipikipi.

Hoʻōla lāʻau pale

Aia kekahi mau hōʻike e hiki i ka mālama ʻana i ka intravenous immunoglobulin (IVIg) (he ʻano immunotherapy hoʻi) ke kōkua i ka hōʻemi ʻana i nā hōʻailona o ka Stiff Person Syndrome. Loaʻa i ka IVIg nā immunoglobulins (nā antibodies kūlohelohe) i hāʻawi ʻia e nā tausani o ka poʻe me nā ʻōnaehana pale olakino.

Hiki ke ho'ōla ʻia ka Stiff Person Syndrome (SPS)?

I kēia manawa, ʻaʻohe lāʻau lapaʻau no ka Stiff Person Syndrome. Hiki i ka lāʻau lapaʻau ke kōkua i ka kaohi ʻana i nā hōʻailona.

He aha ka manaʻolana no ka Stiff Person Syndrome (SPS)?

He kūlana mau loa kēia no ke ola holoʻokoʻa . ʻOkoʻa ke ʻano o ka nānā ʻana mai kēlā kanaka a kēia kanaka ma muli o kekahi mau kumu:

• Ka nui o nā hōʻailona.
• Ka wikiwiki o ka laha ʻana o ka maʻi.
• Pehea ka holomua o ka lāʻau lapaʻau?

He mea nui e hoʻomaka i ka lāʻau lapaʻau i ka wā e hoʻomaka ai nā hōʻailona. Hiki i kēia ke kōkua i ka pale ʻana a i ʻole ka hōʻemi ʻana i ka laha ʻana o ka maʻi a kōkua i ka pale ʻana i nā pilikia lōʻihi. ʻOiai he nui ka poʻe e loaʻa ana ka hōʻoluʻolu me ka lāʻau lapaʻau, hiki i kekahi manawa ke paʻakikī ke kaohi i nā mea hoʻonāukiuki e hoʻoulu ai i nā ʻiʻo spasms.

Hiki ke lilo ka hele wāwae i mea paʻakikī i ka hala ʻana o ka manawa. Hiki ke emi mālie ka hiki ke hana i nā hana o kēlā me kēia lā. I ka holomua ʻana o ka maʻi, piʻi ka pilikia o ka hāʻule ʻana. Pono paha ʻoe e hoʻohana i ke koʻokoʻo, ka mea hele wāwae, a i ʻole ka noho huila.

Hiki ke pale ʻia ka Stiff Person Syndrome (SPS)?

No ka mea he maʻi autoimmune kēia, ʻaʻohe mea hiki iā ʻoe ke hana e pale aku ai .

Pehea e mālama ai iaʻu iho inā loaʻa iaʻu ka Stiff Person Syndrome (SPS)?

Inā hiki, e ho'āʻo e ʻimi i ke kauka loea i ka noiʻi ʻana a me ka mālama ʻana i ka Stiff Person Syndrome. He mea kākaʻikahi kēia maʻi, no laila hiki ke paʻakikī iki. Inā makemake ʻoe e loaʻa ka mālama lapaʻau maikaʻi loa a loaʻa ke ʻano ola maikaʻi loa, pono ʻoe e ʻōlelo a makemake nui e pili ana i ia mea.

He mea maʻamau i ka poʻe me kēia maʻi ke loaʻa nā pilikia olakino noʻonoʻo, e like me ka hopohopo a i ʻole ke kaumaha . Inā ʻoe e ʻike nei i kēia mau hōʻailona, ​​​​he mea nui e kamaʻilio me kāu kauka a i ʻole kekahi loea olakino noʻonoʻo, e like me ke kauka noʻonoʻo.

Inā hiki iā ʻoe a me kou ʻohana, hiki iā ʻoe ke hui pū me kahi hui kākoʻo kahi e hiki ai iā ʻoe ke hālāwai me nā poʻe ʻē aʻe e hoʻomaopopo i kāu mau ʻike.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe ka Stiff Person Syndrome, pono ʻoe e hālāwai pinepine me kāu hui lapaʻau e ʻike inā ua holomua kāu lāʻau a e nānā i ka ulu ʻana o kāu mau hōʻailona.

Inā ʻike ʻoe i nā hōʻailona hou a i ʻole he mau hopena ʻaoʻao mai nā lāʻau lapaʻau, e haʻi i kāu kauka.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

Inā loaʻa iā ʻoe ʻo Stiff Person Syndrome, he mea kōkua paha ke nīnau i kāu kauka i kēia mau nīnau:

• He aha nā lāʻau lapaʻau āu e ʻōlelo ai no kaʻu mau hōʻailona?
• He aha kaʻu e hana ai ma ka home e kōkua ai i koʻu mau hōʻailona?
• He aha nā hōʻailona o nā pilikia e pono iaʻu e makaʻala?
• Pehea kaʻu e manaʻo ai e like me koʻu olakino i ka wā e hiki mai ana?
• Aia kekahi mau hoʻokolohua lapaʻau no ka Stiff Person Syndrome?

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻAʻole maʻalahi ka ʻike ʻana he maʻi laha ʻole kou e like me ka Stiff Person Syndrome. Manaʻo paha ʻoe ua kaumaha, hopohopo, a kānalua hoʻi no ka wā e hiki mai ana. Akā, ʻaʻole pono ʻoe e kū hoʻokahi i kēia. Eia kāu hui lapaʻau e pane i nā nīnau āu e loaʻa ai a kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona.

ʻOiai ke kālele nei kāu lāʻau lapaʻau i kou olakino kino, e hoʻomanaʻo pū i kou olakino noʻonoʻo . ʻOkoʻa nā hōʻailona mai kēlā kanaka a kēia kanaka. Akā ʻo ka noho ʻana me ka ʻeha, ka ʻoluʻolu ʻole, a me nā ʻūmiʻi ʻiʻo hiki ʻole ke wānana ʻia hiki ke hoʻopilikia i kou olakino noʻonoʻo. Hiki i kēia kūlana ke paʻakikī i ka hele ʻana i waho a hana i nā hana o kēlā me kēia lā. No laila, inā makemake ʻoe i ke kākoʻo, mai kānalua e hoʻokaʻaʻike aku i ke kauka ma waho aʻe o kāu poʻe aloha. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi.

ʻO ka Stiff Person Syndrome, ka ʻoʻoleʻa o nā ʻiʻo, nā maʻi neurological, autoimmune, nā antibodies GAD, GABA, ka ʻūlū ʻana o nā ʻiʻo, nā hōʻailona SPS