Ua lohe anei ʻoe e pili ana i kēia protein ʻē i loko o kou koko? (Cryoglobulinemia) E kamaʻilio kākou e pili ana!

I kekahi manawa, hana ʻia nā mea i loko o ko kākou kino i manaʻo ʻole ʻia, ʻeā? I kēia lā, e kamaʻilio kākou e pili ana i kahi kūlana ʻano ʻē iki, akā he mea kūpono loa ia e ʻike. Ua kapa ʻia kēia he cryoglobulinemia. He paʻakikī iki paha ke kani ʻana o ka inoa, akā mai hopohopo, e wehewehe maʻalahi kākou.

He aha ka cryoglobulinemia? I ka ʻōlelo maʻalahi...

I ka ʻōlelo maʻalahi, ʻo ka cryoglobulinemia kahi kūlana kahi e paʻa ai kekahi mau protein ʻano ʻē i loko o kou koko, i kapa ʻia ʻo cryoglobulins, e hui pū, a hana i nā clots ke hōʻike ʻia i nā mahana anuanu. E noʻonoʻo e like me ka ʻaila niu e hau ana ke hoʻokomo ʻoe i loko o ka wai anuanu. Akā hana kēia i loko o ko mākou koko. ʻO kēia kūlana he ʻano vasculitis. He mumū ia, e like me ka pehu ʻana, o kou mau kīʻaha koko, nā ʻōmole liʻiliʻi e lawe ana i ke koko ma kou kino. Ke pehu kēia mau kīʻaha koko, hiki ke hoʻopilikia ʻia ke kahe o ke koko. He aha ka mea e hana ai? Hiki ke hōʻino ʻia kou ʻili, nā aʻalolo, nā hono, nā ʻiʻo, a ʻo ka mea nui loa, nā ʻōpū kūloko e like me kou mau puʻupaʻa. I kekahi manawa ua kapa ʻia kēia he cryoglobulinemic vasculitis.

Aia kekahi mau ʻano cryoglobulinemia?

ʻAe, ʻo kēia mau protein i kapa ʻia ʻo cryoglobulins he ʻano antibody nō hoʻi. Ma muli o ke ʻano o ka antibody i hana ʻia e ko mākou kino, hiki ke hoʻokaʻawale ʻia ka cryoglobulinemia i ʻekolu mau ʻano nui:

• ʻAno I Cryoglobulinemia: ʻO kēia ka mea i hana pinepine ʻia e nā maʻi kanesa e pili ana i kou koko a i ʻole nā ​​​​maʻi kanesa e pili ana i kāu ʻōnaehana pale.
• ʻAno II Cryoglobulinemia a me ke ʻAno III Cryoglobulinemia: ʻIke pinepine ʻia kēia mau ʻano ʻelua me nā kūlana mumū mau loa (ʻo ia hoʻi, lōʻihi). No ka laʻana, hiki ke ʻike ʻia i nā poʻe me nā maʻi autoimmune . ʻOi aku ka maʻamau o ka Type II Cryoglobulinemia i nā poʻe i loaʻa i ka maʻi Hepatitis C (HCV). Ua hui pū ʻia kēia mau ʻano ʻelua a ua kapa ʻia ʻo Mixed Cryoglobulinemia.

Pehea ka maʻamau o kēia kūlana?

He mea laha ʻole ka Cryoglobulinemia.Akā, ʻaʻole hiki i nā kānaka noiʻi ke ʻōlelo pololei i ka nui o ka poʻe i loaʻa i ke ʻano. No ka mea, he haʻahaʻa paha nā pae o kēia mau cryoglobulins i loko o ke koko o kekahi poʻe akā ʻaʻole hōʻike i kekahi mau hōʻailona, ​​​​manaʻo nā kānaka noiʻi e pili ana ke ʻano i hoʻokahi i ka miliona o ka poʻe ma ka honua holoʻokoʻa.

He aha nā hōʻailona? Loaʻa i nā kānaka a pau nā hōʻailona?

ʻAʻole, ʻaʻole e loaʻa nā hōʻailona i nā kānaka a pau me ka cryoglobulinemia. ʻAʻole paha e ʻike kekahi poʻe i kekahi mea. Akā i ka wā e ʻike ʻia ai nā hōʻailona, ​​ʻo ka hōʻailona maʻamau ka ʻili i kapa ʻia ʻo purpura. ʻIke ʻia kēia ma ke ʻano he mau kiko ʻulaʻula a i ʻole nā ​​palapū poni ma nā wāwae haʻahaʻa. Hiki iā ʻoe ke luhi a loaʻa ka ʻeha o nā hono. Hiki ke ʻike ʻia kekahi mau hōʻailona ʻē aʻe. ʻO kēia mau mea:

• Ke hōʻike ʻia i nā mahana anuanu, ʻūmiʻi nā kīʻaha koko ma nā lima a/a i ʻole nā ​​wāwae, e lilo ai lākou i polū. Ua kapa ʻia kēia ʻo ka hanana ʻo Raynaud .
• Ka emi ʻana o ke kaumaha .
• Ke koko kiʻekiʻe (Hypertension).
• Ka pehu ʻana, ʻoiai ma nā kuʻekuʻe wāwae a me nā wāwae (Edema).
• Nā ʻeha ʻili a i kekahi manawa ka make ʻana o nā ʻiʻo (gangrene).
• ʻO ke akepaʻa i hoʻonui ʻia (Hepatomegaly) a i ʻole ka spleen i hoʻonui ʻia (Splenomegaly).
• Ka mae ʻana , ke ʻūlū ʻana, a i ʻole ka nāwaliwali o nā lālā.
• Ka pōʻino o nā puʻupaʻa.

E noʻonoʻo e pili ana i ia mea, ʻaʻole kēia he hihia wale nō o kou mau lālā e polū ana i ke anu. He hōʻailona paha kēia o kahi pilikia nui aʻe i loko o kou kino. No laila he mea nui e makaʻala i nā mea e like me kēia.

He aha nā kumu o ka cryoglobulinemia?

ʻAʻole maopopo i nā kānaka noiʻi ke kumu o ka cryoglobulinemia. Akā e like me kā mākou i kūkākūkā ai ma mua, he ʻano maʻi autoimmune ia i kapa ʻia ʻo vasculitis, ʻo ia hoʻi ka mumū o nā kīʻaha koko. ʻO kahi maʻi autoimmune wale nō ka wā e hoʻouka hewa ai ka ʻōnaehana pale o kou kino ponoʻī, ka ʻōnaehana pale o ke kino e pale aku iā ʻoe mai ka maʻi, i kāu mau ʻiʻo olakino ponoʻī. Aia kekahi mau kumu e hiki ke kōkua i kēia hopena:

• ʻIke hoʻoilina: Inā loaʻa i kekahi o ka ʻohana, hiki ke hoʻopilikia ʻia.
• Kekahi ʻano lāʻau lapaʻau: ʻAʻole nā ​​​​lāʻau lapaʻau a pau, akā kekahi.
• Nā maʻi a me nā virus: ʻOi aku ka maʻi viral.
• Nā kumu o ke kaiapuni: Kekahi mau mea i ke kaiapuni a puni mākou.

Hiki i ka Cryoglobulinemia ke hana i kekahi manawa ma kāna iho me ke kumu ʻole (ua kapa ʻia kēia he idiopathic), akā ʻoi aku ka pinepine o ka hana ʻana me nā maʻi ʻē aʻe. ʻO kekahi o kēia mau maʻi:

• Maʻi Hepatitis C: ʻO kēia ka loulou nui a ʻike pinepine ʻia.
• Nā mea ʻē aʻe i loko o nā hunaola koko: No ka laʻana, nā maʻi kanesa e like me ka lymphoma a me ka myeloma maha.
• Nā maʻi pili o nā ʻiʻo: ʻO kahi laʻana ʻo lupus.

ʻO wai ka mea i pilikia nui no kēia?

ʻIke ʻia ka hopena o ka Cryoglobulinemia i nā wahine ma mua o nā kāne, a ʻoi aku ka maʻamau i ka poʻe ma luna o 50 mau makahiki.

Hiki ke loaʻa nā pilikia inā ʻaʻole mālama pono ʻia?

ʻAe, ʻoiaʻiʻo nō. Inā ʻaʻole mālama pono ʻia ka cryoglobulinemia, hiki iā ia ke hōʻeha mau loa i kou ʻili, nā ʻiʻo, a me nā ʻōpū o loko. ʻO kekahi o nā pilikia koʻikoʻi e hiki ke hana ʻia:

• Nā maʻi ʻili a i ʻole nā ​​​​ʻeha e ho'ōla ʻole ʻia.
• Make ʻili (necrosis).
• Ka hāʻule ʻana o nā puʻupaʻa.
• Ka hemahema o ke akepaʻa.

He mau kūlana koʻikoʻi maoli kēia, ʻo ia ke kumu he mea nui e ʻike koke a mālama i ka maʻi.

Pehea e ʻike ai nā kauka i kēia maʻi?

Ke ʻike ʻoe i ke kauka, e nīnau mua ʻo ia e pili ana i kou mōʻaukala olakino a hana i kahi hoʻokolokolo kino. A laila, e kauoha lākou i kahi hoʻāʻo koko kūikawā e nānā i nā cryoglobulins i loko o kou koko. Hiki i kēia hoʻāʻo koko ke haʻi iā ʻoe i ke ʻano o ka cryoglobulin āu. Hiki i kēia ke kōkua i kekahi manawa e hoʻoholo i ke kumu o kou kūlana a pehea e mālama ai. Ma waho aʻe o kēia hoʻāʻo koko, hiki i kāu kauka ke kauoha i kekahi mau hoʻokolohua ʻē aʻe e hōʻoia i ka hōʻailona a hoʻomaopopo i ke kūlana:

• He hoʻāʻo mimi (Urinalysis).
• He kiʻi X-ray o ka umauma.
• ʻO ka scan CT (Computer tomography (CT) scan).
• ʻO kahi angiogram (nānā i ke kūlana o nā kīʻaha koko).
• Nā hoʻokolohua MRA (magnetic resonance angiogram) a i ʻole CT angiogram (CT angiogram).
• He hoʻāʻo hoʻoili aʻalolo.
• He hoʻāʻo electromyography (EMG) (e nānā i ka hana o nā ʻiʻo).
• ʻO kahi biopsy (lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo, malia paha mai ka ʻili a i ʻole ka puʻupaʻa, no ka hoʻokolokolo ʻana).

Pehea e mālama ʻia ai kēia?

ʻO ka mālama ʻana no ka cryoglobulinemia e pili ana i nā ʻōpū i hoʻopilikia ʻia, ka nui o ka hōʻino, a inā he mau maʻi ʻē aʻe kāu.He mea nui e mālama i nā kūlana ʻē aʻe e pili ana paha me ka cryoglobulinemia, e like me ka hepatitis C, a me nā kūlana ʻē aʻe e pili ana paha me ia. ʻO kēia no ka mea hiki i ka mālama ʻana i kēlā mau kūlana ʻē aʻe ke kōkua i ka hōʻemi ʻana i nā hōʻailona o ka cryoglobulinemia. Inā ʻaʻole koʻikoʻi kāu mau hōʻailona, ​​​​hiki i kāu kauka ke ʻōlelo aku i nā lāʻau hōʻoluʻolu ʻeha ma luna o ke kauka (e like me NSAID) a aʻo aku iā ʻoe e pale i ka ʻike ʻana i nā mahana anuanu . Hiki iā lākou ke ʻōlelo aku iā ʻoe e nānā mau i kou kūlana. I nā hihia ʻoluʻolu a koʻikoʻi paha, ʻokoʻa iki paha ka lāʻau lapaʻau:

• Nā lāʻau pale ʻana i ka maʻi: ʻO kēia ka lāʻau lapaʻau nui. Hāʻawi ʻia nā corticosteroids, e like me ka prednisone, i kekahi manawa me nā lāʻau ʻē aʻe. Aia kēia i ka ʻōpū i hoʻopilikia ʻia a me ka nui o ka pōʻino.
• Nā lāʻau lapaʻau antiviral: Inā ʻike kāu kauka he maʻi ʻē aʻe kou, e like me ka hepatitis C, hiki iā ia ke ʻōlelo aku i ka lāʻau antiviral. Hiki iā lākou ke kuhikuhi iā ʻoe i kahi loea ate (hepatologist).
• ʻO Biologics: He lāʻau lapaʻau maʻamau ʻo Rituximab no ka cryoglobulinemia. He mau protein paʻakikī nā Biologics i hana ʻia mai nā meaola ola e kuhikuhi ana i nā ʻāpana kikoʻī o ka ʻōnaehana pale e kāohi i ka mumū.
• Plasmapheresis: He lāʻau lapaʻau ʻē aʻe kēia. Hana ia ma ka hoʻēmi ʻana i ka nui o nā cryoglobulins i loko o kou koko. Ma kēia kaʻina hana, hoʻoneʻe ʻia nā cryoglobulins mai kou plasma (ka ʻāpana wai o kou koko). Kōkua kēia i ka pale ʻana i nā cryoglobulins mai ke pani ʻana i kou mau aʻa, e ālai ana i ke kahe koko a me ka hōʻemi ʻana i ka hōʻino ʻana o nā ʻōkana.

E makaʻala hoʻi kākou i nā hopena ʻaoʻao a me nā pilikia o ka lāʻau lapaʻau.

Hiki i nā lāʻau lapaʻau a nā kauka e kuhikuhi ai e mālama i ka cryoglobulinemia ke loaʻa kekahi mau hopena koʻikoʻi. ʻO nā mea nui ka osteoporosis a me ka emi ʻana o ka hiki o ke kino ke hakakā i nā maʻi. No laila, he mea nui loa ia e ʻike pinepine i kāu kauka no nā nānā ʻana. A laila, hiki i kāu kauka ke kuhikuhi i nā lāʻau lapaʻau ʻē aʻe e kāohi i kēia mau hopena ʻaoʻao. He mea nui hoʻi e pale iā ʻoe iho mai nā maʻi. No laila, e kamaʻilio me kāu kauka e pili ana i nā lāʻau pale e hiki ke hōʻemi i ka pilikia o ka maʻi.

Aia kekahi ala e pale aku ai i kēia maʻi?

No ka mea, ʻaʻole ʻike ʻia ke kumu kikoʻī o ka cryoglobulinemia, ʻaʻohe ala kikoʻī e pale aku ai. Eia nō naʻe, hiki i ka pale ʻana i ka ʻike ʻana i ke anu ke kōkua .Hiki iā ia ke kōkua i ka kaohi ʻana i kekahi mau hōʻailona, ​​​​e like me ka hanana ʻo Raynaud. He mea nui loa hoʻi e hoʻāʻo ʻia no ka maʻi Hepatitis C a loaʻa ka lāʻau lapaʻau inā loaʻa iā ʻoe.

He aha ka wānana no kekahi e ola nei me kēia maʻi?

ʻO kou hiʻohiʻona, ʻo ia hoʻi, ke ʻano o ka maʻi, e pili ana i kekahi mau mea:

• Nā pilikia olakino ʻē aʻe āu e loaʻa nei.
• ʻO ka nui o ka hōʻino ʻia i kou mau kino.
• Pehea ka maikaʻi o kāu pane ʻana i ka lāʻau lapaʻau.

Eia kekahi, ʻokoʻa ke koʻikoʻi o ka maʻi mai kēlā kanaka a kēia kanaka. ʻAʻohe hōʻailona iki o kekahi poʻe, a i ʻole he palupalu loa ko lākou kūlana a ʻaʻole pono lākou e mālama ʻia. No ka poʻe me nā hihia kaulike a koʻikoʻi paha, hiki i ka ʻike mua a me ka mālama ʻana ke kōkua i ka hōʻoluʻolu ʻana i nā hōʻailona a pale i nā pilikia lōʻihi. Inā ʻaʻole i hōʻino mau ʻia kou mau kino, maikaʻi loa ka nānā ʻana.

Pehea wau e mālama ai iaʻu iho? ʻO wai ka mea e kōkua mai iaʻu?

ʻO ka mea maikaʻi loa hiki iā ʻoe ke hana, ʻo ia ke hana pū me kāu hui lapaʻau. Ma muli o nā ʻōpū i hoʻopilikia ʻia e kāu cryoglobulinemia, pono paha ʻoe e hana pū me kahi hui kauka multidisciplinary. Hiki i kēia mau mea ke komo pū me:

• Nā kauka loea i nā maʻi hono a me nā maʻi pili (Rheumatologists).
• Nā kauka ʻili.
• Nā kauka koko.
• Nā kauka loea i nā maʻi puʻupaʻa (Nephrologists).
• Nā kauka puʻuwai.
• Nā kauka lolo.
• Nā kauka maʻi hepa.

E ʻike pono i kāu hui lapaʻau. E ʻōlelo nou iho. E nīnau i nā nīnau. Inā he mau hopohopo kāu e pili ana i kāu hoʻolālā lapaʻau, e kamaʻilio e pili ana. Aia kāu mau kauka ma laila e hoʻolohe iā ʻoe a e hōʻoia i kou maopopo piha ʻana i nā mea āpau e pili ana i kou olakino a me kou mālama ʻana.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe kekahi mau hōʻailona o ka cryoglobulinemia, pono ʻoe e ʻimi koke i ke kōkua lapaʻau. Eia kekahi, inā loaʻa iā ʻoe ka hepatitis C a ʻike ʻia kekahi o kēia mau hōʻailona, ​​e ʻike i ke kauka. ʻOiai me ka mālama pono ʻana, hiki i ka maʻi ke hoʻi hou (relapse) i kekahi manawa. Inā loaʻa iā ʻoe nā hōʻailona hou, inā e ʻoi aku ka ʻino o kāu mau hōʻailona, ​​a inā hoʻi hou kāu mau hōʻailona, ​​e ʻike i ke kauka. He mea nui nā nānā lapaʻau maʻamau a me ka hahai mau ʻana e ʻike koke i nā hoʻi hou ʻana a pale i nā pilikia.

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

Ke ʻike ʻoe i kāu kauka, he mea maikaʻi ke nīnau i nā nīnau e like me kēia:

• He aha ke kumu i loaʻa ai iaʻu kēia maʻi?
• He aha nā lāʻau lapaʻau āu e paipai nei?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau e pono iaʻu e hopohopo?
• He aha nā pilikia e hiki ke hana ma muli o kēia ʻano?
• He aha kaʻu e hana ai e pale aku i ka hoʻi hou ʻana mai o ka maʻi?

Nā mea nui a mākou e hoʻomanaʻo ai (Leka Lawe-Home)

Hiki i ka noho ʻana me ka cryoglobulinemia ke paʻakikī i kekahi manawa. Hiki i nā hōʻailona a me nā hopena ʻaoʻao o nā lāʻau lapaʻau ke loaʻa ka hopena nui i kou olakino noʻonoʻo. Hiki iā ia ke hoʻopilikia i nā ʻano ʻē aʻe o kou ola.

Akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. E noi i kāu kauka no ke kōkua, a e ʻimi i nā hui kākoʻo kahi e hiki ai i nā poʻe ʻē aʻe e hele nei i nā kūlana like ke hui pū. ʻO ka kaʻana like ʻana i kāu mau ʻike a me nā mea āu i ʻike ai ke kōkua iā ʻoe e ola me ka cryoglobulinemia. ʻO ka pale ʻana iā ʻoe iho mai ke anu, ka ʻimi ʻana i ka ʻōlelo aʻoaʻo lapaʻau, ka puhi ʻole ʻana, a me ka ʻai ʻana i ka meaʻai kaulike he mea nui ia.

Manaʻolana wau he mea pono kēia ʻike iā ʻoe. E ola kino!