ʻO Hemophilia a me Alhemo: He lāʻau lapaʻau hou e kāohi ai i ke kahe koko

Ua lohe paha ʻoe i kahi maʻi i kapa ʻia ʻo hemophilia ? He maʻi kakaikahi kēia akā he maʻi koʻikoʻi loa. I ka ʻōlelo maʻalahi, he maʻi ia kahi i ʻole ai ke koko e paʻa pono i loko o ko kākou kino. ʻO ke ʻano kēia, ʻoiai he ʻeha liʻiliʻi, hāʻule ʻana, a ʻoki paha, hiki ke hoʻokahe nui i ke koko. I kekahi manawa, hiki ke kahe koke ke koko me ke kumu ʻole.

He aha maoli ka hemophilia?

E noʻonoʻo i ka wā e kahe ai ke koko, aia i loko o ko kākou kino kahi hui liʻiliʻi o nā limahana e hana ana e hoʻōki iā ia. Kāhea mākou i kēia mau limahana he 'nā kumu'. He mau ʻano protein kūikawā kēia. Hoʻohui pū kēia mau mea e hana i kahi ʻūpā koko a hoʻōki i ke kahe ʻana o ke koko.

ʻElua mau ʻano nui o ka hemophilia:

• Hemophilia A: ʻAʻole lawa ka protein i kēia poʻe i kapa ʻia ʻo factor VIII , ka mea e pono ai no ke kāpili ʻana o ke koko.
• Hemophilia B : ʻAʻohe o kēia poʻe i kahi protein i kapa ʻia ʻo factor IX .

ʻO ka maʻamau, mālama ʻia kēia e kāu kauka e hāʻawi ana iā ʻoe i ka mea hemahema ma o ka intravenous. ʻO ka lāʻau lapaʻau e pale aku i ke kahe ʻana o ke koko ua kapa ʻia ʻo "prophylaxis," a ʻo ka lāʻau lapaʻau ke kahe ke koko ua kapa ʻia ʻo "on-demand."

Akā, aia kahi pilikia liʻiliʻi ma aneʻi ...

I kekahi mau maʻi, hoʻomaka ke kino e hana kūʻē i kēia mau mea a mākou e hāʻawi ai ma o ka lāʻau pale. Me he mea lā ua manaʻo ʻo ia he ʻenemi lākou a hoʻouka iā lākou. Kāhea mākou i kēia ʻo ke kūkulu ʻia ʻana o nā "inhibitors" . Ke hana ʻia kēia, ua emi ka mana o ka factor therapy a mākou e hāʻawi ai. No laila, ʻoi aku ka paʻakikī o ka mālama ʻana i nā kānaka me kēia ʻano 'inhibitors'.

He aha ka mea e hana ʻia me kēia lāʻau lapaʻau hou i kapa ʻia ʻo Alhemo?

ʻAlhemo(concizumab-mtci) kahi lāʻau lapaʻau hou i ʻāpono ʻia e hōʻemi a pale aku paha i ke kahe ʻana o ke koko, ʻoiai i nā poʻe maʻi me ka hemophilia A a i ʻole hemophilia B nona nā 'inhibitors' i ʻōlelo mua ʻia.

I ka ʻōlelo maʻalahi, loaʻa i ko kākou kino kahi protein e pale ai i ke koko mai ka hoʻopili ʻana. Ua kapa ʻia ʻo TFPI (Tissue Factor Pathway Inhibitor) . E noʻonoʻo iā ia e like me kahi 'mākaʻi kaʻa' i loko o ko kākou kino; hoʻomalu ia i ke kaʻina hana hoʻopili koko. ʻO ka mea a Alhemo e hana ai, ʻo ia ke hoʻopilikia iki i ka hana a kēia 'mākaʻi' i kapa ʻia ʻo TFPI. A laila, hoʻonui ke kino i ka hana ʻana o kekahi mea ʻē aʻe e kōkua ai i ke kāpili ʻana o ke koko (factor Xa), a hoʻomaikaʻi ʻia ka hiki ke hana i nā ʻūpā koko. Hoʻemi nui kēia i ka pilikia o ke kahe ʻana o ke koko.

Pehea e hoʻohana ai iā Alhemo?

He inikini subcutaneous i kēlā me kēia lā ʻo Alhemo. Loaʻa ia i loko o kahi peni i hoʻopiha mua ʻia, no laila he maʻalahi loa ka hoʻohana. Inā hoʻoholo kāu kauka hiki iā ʻoe ke hāʻawi iā ʻoe iho i kēia inikini ma ka home, e hōʻike pololei lākou iā ʻoe pehea e hana ai.

• Ka nui o ka lāʻau: Hāʻawi ʻia kahi nui iki aʻe (ka nui o ka lāʻau hoʻouka) i ka lā mua o ka lāʻau. Ma hope o kēlā, pono ʻoe e lawe i ka nui mālama i kuhikuhi ʻia i kēlā me kēia lā. Hoʻoholo ʻia ka nui ma muli o kou kaumaha, no laila pono ʻoe e haʻi i kāu kauka inā loli kou kaumaha.
• Nā hoʻāʻo: ʻEhā pule ma hope o ka hoʻomaka ʻana o ka lāʻau lapaʻau, e loaʻa iā ʻoe kahi hoʻāʻo koko e nānā inā pololei ka nui o ka lāʻau lapaʻau i loko o kou kino. Ma muli o nā hopena, hiki i kāu kauka ke hoʻoponopono i kāu dosage.
• Nā wahi i hoʻopili ʻia ai: Hāʻawi ʻia ka lāʻau pale ma ka ʻōpū (2 ʻīniha a puni ka piko) a i ʻole ka ʻūhā. Mai hoʻokomo ma kahi hoʻokahi i kēlā me kēia lā, akā e hoʻololi i kahi. Mai hoʻokomo ma nā wahi i ʻeha, palapū, ʻulaʻula, loaʻa ka eczema, a i ʻole he mau ʻōpala .

He aha nā hopena ʻaoʻao? Pehea e hana ai me lākou?

E like me nā lāʻau lapaʻau āpau, hiki iā Alhemo ke loaʻa nā hopena ʻaoʻao.

Nā hopena ʻaoʻao maʻamau

No ka mea he lāʻau pale kēia, hiki ke loaʻa nā hopena liʻiliʻi ma kahi i hoʻokomo ʻia ai . Eia kekahi laʻana:

• ʻEha, ʻulaʻula, maneʻo, a i ʻole ke kahe iki ʻana o ke koko ma kahi i inikini ʻia.
• No ke kōkua ʻana i kēia, hiki iā ʻoe ke kau i kahi ʻūlū anuanu ma ia wahi.
• Hiki ke hoʻemi ʻia kēia ma ka hoʻololi ʻana i kahi i inikini ʻia i kēlā me kēia lā.
• Mai lawe i nā lāʻau ʻeha a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe me ka ʻole o ke kūkākūkā ʻana me kāu kauka.

Nā hopena ʻaoʻao koʻikoʻi - e makaʻala loa i kēia!

ʻO kēia mau lima, nā wāwae, nā māmā, ka puʻuwai i paʻa i ke kokoA i ʻole hiki ke hana ʻia i loko o nā aa koko ma nā wahi e like me ka lolo. Inā ʻoe e hoʻomākaukau ana no kekahi ʻoki kino, pono ʻoe e haʻi i kāu kauka e pili ana i ia mea.

Inā ʻike ʻoe i kekahi o nā hōʻailona ma lalo nei, e ʻimi koke i ke kōkua lapaʻau me ka hoʻokaʻulua ʻole:

• Nā palpitations o ka puʻuwai
• ʻEha a ʻeha paha ka umauma
• Paʻakikī ka hanu ʻana
• Ka paʻakikī o ka ʻōlelo ʻana, nā loli i ka ʻike
• ʻEha a pehu paha i nā wāwae

Pehea ʻoe e loaʻa ai kahi lāʻau lapaʻau kūikawā e like me kēia?

ʻAʻole ʻo Alhemo kahi lāʻau lapaʻau hiki iā ʻoe ke kūʻai ma kahi hale kūʻai lāʻau maʻamau. He ʻano 'lāʻau lapaʻau kūikawā' kēia. Aia kekahi kaʻina hana kūikawā e loaʻa ai kēia mau mea.

Ma hope o ke kau ʻana o kāu kauka i ka lāʻau lapaʻau, e hoʻokaʻaʻike ʻia ʻoe e kahi hale kūʻai lāʻau lapaʻau kūikawā. ʻO lākou ka poʻe e hāʻawi iā ʻoe i nā kikoʻī e pili ana i ke ʻano o ka hoʻouna ʻana i ka lāʻau lapaʻau i kou home. Pono paha ʻoe e loaʻa ka ʻae mua mai kāu ʻoihana ʻinikua. Hiki paha i kahi ʻelele mai ka ʻoihana e hana ana i ka lāʻau lapaʻau ke kōkua me kēia kaʻina hana. E alakaʻi kāu kauka iā ʻoe ma o kēia mau mea āpau.