ʻO nā mea āpau āu e ʻike ai e pili ana iā ADPKD

Anter

• Nā ʻōuli o ADPKD
• Ka mālama ʻana iā ADPKD
• Nā hopena ʻaoʻao o ka mālama ʻana no ADPKD
• Nānā ʻia no ADPKD
• Kuhi o ADPKD
• Nā kumu o ADPKD
• Nā pilikia
• ʻO ke ola a me ka nānā aku i ke ola

ʻO ka Autosomal domic polycystic kidney maʻi (ADPKD) kahi maʻi maʻamau e ulu ai nā cist i nā puʻupaʻa.

Hōʻike ka National Institute of Diabetes and Digestive and Kidney Diseases e pili ana i kahi 1 i ka 400 a i ka 1000 mau kānaka.

E heluhelu e aʻo hou e pili ana i kāna:

• ʻōuli
• kumu
• na lapaau

Nā ʻōuli o ADPKD

Hiki iā ADPKD ke hana i nā ʻano like ʻole, me:

• ʻeha poʻo
• ʻeha ma kou kua
• ʻeha ma kou mau ʻaoʻao
• ke koko i kou mimi
• hoʻonui ʻia ka nui o ka ʻōpū
• kahi ʻano piha i kou ʻōpū

Hoʻokumu pinepine nā ʻōuli i ke ʻano makua, ma waena o nā makahiki 30 a 40 mau makahiki, ʻoiai ʻike ʻia kekahi i nā makahiki i hala aʻe. I kekahi mau hihia, ʻike ʻia nā ʻōuli i ka wā kamaliʻi a i ʻole ke ʻōpio.

ʻOi aku ka maikaʻi o nā ʻōuli o kēia ʻano i ka hala ʻana o ka manawa.

Ka mālama ʻana iā ADPKD

ʻAʻohe lāʻau lapaʻau i ʻike ʻia no ADPKD. Eia nō naʻe, loaʻa nā lapaʻau e kōkua i ka mālama ʻana i ka maʻi a me nā pilikia kūpono.

I mea e lohi ai i ka hoʻomohala ʻana o ADPKD, hiki i kāu kauka ke kuhikuhi i ka tolvaptan (Jynarque).

ʻO ia wale nō ka lāʻau i ʻae ʻia e ka Food and Drug Administration (FDA) e mālama pono iā ADPKD. Hiki i kēia lāʻau ke kōkua i ka hoʻolohi a pale paha i ka holo pono ʻole ʻana o ke kō.

Kaukaʻi ʻia i kāu kūlana kikoʻī a me nā pono e pono ai, hiki i kāu kauka ke hoʻohui i hoʻokahi a ʻoi paha o kēia mau mea i kāu papa hana.

• loli ka nohona e kōkua i ka hoʻohaʻahaʻa i ke kahe o ke koko a hoʻoikaika i ke olakino
• ka lāʻau e kōkua ai i ka hōʻemi ʻana i ke koko, hōʻoluʻolu i ka ʻeha, a i ʻole mālama i nā maʻi i hiki ke loaʻa i nā puʻupaʻa, ka mimi, a i ʻole nā ​​wahi ʻē aʻe
• ʻoki kino e hoʻoneʻe i nā cist e hōʻeha i nā ʻeha koʻikoʻi
• inu wai i loko o ka lā a pale i ka caffeine e hoʻolohi i ka ulu ʻana o nā cist (ke noiʻi nei nā kānaka noiʻi i ka hopena o ka hydration i ka ADPKD)
• e ʻai nei i nā ʻāpana liʻiliʻi o nā protein kiʻekiʻe
• ka palena ʻana i ka paʻakai, a i ʻole ka sodium, i kāu papaʻai
• e hōʻalo nei i ka nui o ka potasiuma a me ka phosphorous i kāu papaʻai
• ka palena ʻana i ka inu lama

ʻO ka mālama ʻana iā ADPKD a pili pū me kāu papa hoʻolālā hiki ke lilo i mea paʻakikī, akā he mea nui ia no ka hoʻolōʻihi i ka holomua o ka maʻi.

Inā kuhikuhi kāu kauka iā tolvaptan (Jynarque), pono ʻoe e hana i nā hoʻokolohua maʻamau e loiloi i ke olakino o kou akepaʻa no ka mea hiki i ka lāʻau ke hōʻeha i ka ate.

E nānā pono kāu kauka i ke olakino o kou puʻupaʻa e ʻike inā kūpaʻa ke kūlana a holomua paha.

Inā hoʻomohala ʻoe i ka hōʻino kīhāpai, pono ʻoe e loaʻa i ka dialysis a i ʻole ke transplant kidney e uku no ka nalo ʻana o ka hana hakuʻala.

E kamaʻilio me kāu kauka e aʻo hou aʻe e pili ana i kāu koho lapaʻau, e like me nā pōmaikaʻi kūpono, nā pilikia, a me nā kumukūʻai o nā ʻano lapaʻau ʻokoʻa.

Nā hopena ʻaoʻao o ka mālama ʻana no ADPKD

ʻO ka hapa nui o nā lāʻau e noʻonoʻo ai kāu kauka e kōkua ai e mālama a mālama paha iā ADPKD e halihali i kekahi mau hopena o ka hopena.

ʻO kahi laʻana, hiki iā Jynarque ke make wai i ka make wai nui, ka mimiki pinepine ʻana, a i kekahi mau manawa, hōʻino nui i ke ake. Aia kekahi mau hōʻike e pili ana i ke kūpikipiki ʻole o ke ake e koi ana i ka lawe ʻana o ke ake i loko o kēlā me kēia kanaka e lawe ana iā Jynarque.

ʻO nā lāʻau lapaʻau ʻē aʻe e kuhikuhi ana i nā ʻōuli kikoʻī o ADPKD paha i kumu i nā hopena ʻaoʻao. E aʻo hou aʻe e pili ana i nā hopena hopena o nā ʻano lāʻau like ʻole, e kamaʻilio me kāu kauka.

Inā manaʻo ʻoe ua hoʻomohala ʻoe i nā hopena ʻaoʻao mai ka mālama ʻana, e hōʻike koke i kāu kauka. Paipai paha lākou i nā loli i kāu hoʻolālā lapaʻau.

E kauoha paha kāu kauka i nā hoʻokolohua maʻamau ʻoiai ʻoe e hana nei i kekahi mau ʻano mālama e nānā ai i nā hōʻailona o ka hōʻino o ke ake a i ʻole nā ​​hopena ʻē aʻe.

Nānā ʻia no ADPKD

ʻO ka maʻi maʻi polycystic kidney (PKD) kahi maʻi maʻi.

Loaʻa ka hoʻāʻo DNA, a aia ʻelua ʻano ʻano like o nā hoʻāʻo.

• Ke hoʻāʻo nei i ka pilina paʻa. Nānā kēia hōʻike i kekahi mau māka ma ka DNA o nā lālā o ka ʻohana i loaʻa ka PKD. Pono ia i nā laʻana koko mai iā ʻoe a me nā lālā o ka ʻohana i pili a pili ʻole ʻia e PKD.
  
• ʻImi hoʻokahuli pololei / Hoʻohālikelike DNA. Koi wale kēia hōʻike i hoʻokahi laʻana mai iā ʻoe. Nānā pololei ia i ka DNA o nā genes PKD.

Kuhi o ADPKD

No ke koho ʻana iā ADPKD, e nīnau ana kāu kauka iā ʻoe e pili ana i:

• kou mau ʻōuli
• mōʻaukala pilikino pilikino
• moʻolelo mōʻaukala ʻohana

Hiki iā lākou ke kauoha i kahi ultrasound a i ʻole nā ​​hōʻike kiʻi ʻē aʻe e nānā no nā cista a me nā kumu kūpono ʻē aʻe o kāu mau ʻōuli.

Kauoha paha lākou i ka hoʻāʻo ʻana i ka ʻikepili e aʻo inā loaʻa iā ʻoe kahi hoʻololi kūpona i kumu iā ADPKD. Inā loaʻa iā ʻoe ka ʻāpana i hoʻopilikia ʻia a loaʻa pū he mau keiki, hiki iā lākou ke paipai iā lākou e hoʻāʻo pū kekahi i nā genetic.

Nā kumu o ADPKD

ʻO ADPKD kahi ʻano hoʻoilina hoʻoilina.

I ka hapanui o nā hihia, hopena ia mai ka hoʻololi ʻana o ka ʻaoʻao PKD1 a i ʻole ka ʻaoʻao PKD2.

No ka hoʻomohala ʻana iā ADPKD, pono i ke kanaka hoʻokahi kope o ka ʻāpana i hoʻopili ʻia. Ua hoʻoilina lākou i ka ʻāpana i hoʻopā ʻia mai kekahi o ko lākou mau mākua, akā i nā manawa kakaikahi, hiki ke kū wale ka hoʻololi ʻana o ka genetic.

Inā loaʻa iā ADPKD a ʻaʻole i loaʻa i kāu pakanā a hoʻoholo ʻoe e hoʻomaka pū i kahi ʻohana, loaʻa i kāu mau keiki he 50 pākēneka manawa kūpono e ulu ai ka maʻi.

Nā pilikia

Hāʻawi ke kūlana iā ʻoe i ka makaʻu no nā pilikia, e like me:

• kahe koko kiʻekiʻe
• maʻi maʻi urinary tract
• cyst ma kou akepa a i ʻole pancreas
• kiwikā puʻuwai maikaʻi ʻole
• aneurysm lolo
• hakuʻala ʻole

ʻO ke ola a me ka nānā aku i ke ola

ʻO kou kali ʻana i kou ola a me kou nānā me ADPKD kaukaʻi ʻia i nā kumu he nui, e like me:

• ka hoʻohuli genetical kiko'ī ke kumu ia o ADPKD
• nā pilikia āu e hoʻomohala ai
• nā mālama i loaʻa iā ʻoe a pehea kou pili pono i kāu papa hana
• kou olakino a me kou nohona holoʻokoʻa

E kamaʻilio me kāu kauka e aʻo hou e pili ana i kou ʻano a me kou nānā. Ke kuhi ʻia ʻo ADPKD i ka wanaʻao a mālama pono ʻia, hiki i ka poʻe ke mālama i ke ola piha.

ʻO kahi laʻana, nui nā poʻe me ADPKD e hana mau nei ke ʻike ʻia ua hiki ke hoʻomau i kā lākou ʻoihana.

ʻO ka hoʻomaʻamaʻa ʻana i nā ʻano olakino a me ka hāhai ʻana i kāu papa kauka lapaau i koi ʻia e kōkua i ka pale ʻana i nā pilikia a mālama i kou mau puʻupaʻa no ka lōʻihi.