Ma ke ʻano he makuahine a makua paha, e nānā pono ʻoe i kēlā me kēia loli liʻiliʻi i ke kino o kāu keiki, ʻeā? I kekahi manawa, ʻo ka mea liʻiliʻi loa a mākou e ʻike ai he hōʻailona ia o kahi mea nui aʻe. I kēia lā ke kamaʻilio nei mākou e pili ana i kekahi ʻano maʻi kakaikahi loa, akā he mea nui i nā mea a pau ke ʻike e pili ana i ia mea. ʻO kēia maʻi ʻo Fibrodysplasia Ossificans Progressiva, a i ʻole FOP no ka pōkole.
He aha maoli ka FOP?
I ka ʻōlelo maʻalahi, ʻo kēia maʻi ka wā e lilo mālie ai nā ʻiʻo palupalu i loko o ko kākou kino, e like me nā ʻiʻo, nā ligaments, a me nā tendons, i mau iwi. E noʻonoʻo e pili ana i ia mea, aia nā ʻiʻo o ko kākou kino e palupalu a neʻe. Aia ko kākou mau iwi e hāʻawi i kahi ʻano a me kahi ʻōnaehana ikaika. He ʻokoʻa loa nā hana o kēia mau ʻōnaehana ʻelua.
Akā i loko o kēia kūlana kakaikahi i kapa ʻia ʻo FOP, haki kēia ʻōnaehana hoʻonohonoho. Hoʻomaka ke kino e hoʻololi i nā ʻiʻo palupalu i iwi ma kona iho. Me he mea lā e ulu ana kahi iwi hou i loko o mākou, ma waho o ko mākou iwi maʻamau.
I ka wā e hana ʻia ai nā iwi hou ma kēia ʻano, e lilo mālie ana ka neʻe ʻana o nā ʻāpana like ʻole o ke kino i mea paʻakikī, i kekahi manawa hiki ʻole loa. Hoʻolilo kēia i nā hana o kēlā me kēia lā e like me ke kamaʻilio ʻana a me ka ʻai ʻana i ka meaʻai i mea paʻakikī.
Hoʻomaka pinepine kēia maʻi i ka wā kamaliʻi. Hoʻomaka mua ia ma ka ʻāʻī a me nā poʻohiwi a pālahalaha mālie i ke kino haʻahaʻa. I ka wā e ʻelemakule ai ka poʻe, piʻi ka nui o ka iwi e pani ana i nā ʻiʻo palupalu. Eia nō naʻe, hiki ke ʻokoʻa ka wikiwiki o ka holomua ʻana mai kēlā kanaka a kēia kanaka.
No ke aha lā kēia e hana nei? He aha ke kumu?
ʻO ke kumu nui he kīnā liʻiliʻi i loko o kahi gene e haʻi ana i ko mākou kino pehea e ulu ai nā iwi a me nā ʻiʻo. ʻO ka ʻoiaʻiʻo, ʻoiai i ka wā o ka ulu olakino, lilo kekahi mau ʻiʻo palupalu i iwi. Akā ma muli o kēia kīnā genetic, hana ke kino i ka iwi ma mua o ka mea e pono ai, i ka wā ʻaʻole pono.
ʻO ka hapa nui o ka manawa, ʻaʻole kēia he mea i hoʻoilina ʻia mai nā mākua a i nā keiki. Eia nō naʻe, hiki ke hana pinepine ʻia. ʻO ka hapa nui, he loli maʻamau ia i nā genes (nā mutations hou) e hana ʻia i ka wā o ke ola.
He aha nā hōʻailona nui o kēia maʻi?
ʻElua mau hōʻailona nui e kōkua i ka ʻike ʻana i kēia maʻi. He mea nui loa ia e makaʻala i kēia mau mea.
ʻIke ʻia ka hōʻailona mua a maopopo loa i ka wā hānau. ʻOi aku ka pōkole o nā manamana wāwae nui ma nā wāwae ʻelua ma mua o ka maʻamau a huli i loko, ʻo ia hoʻi, i nā manamana wāwae ʻē aʻe. Ma kahi o 50% o nā keiki, ʻike ʻia ka ʻokoʻa like ma nā manamana wāwae nui ma nā lima. He hōʻailona mua koʻikoʻi loa kēia e kānalua ai i kēia maʻi.
ʻO ka lua o nā hōʻailona nui, ʻo ia ka lilo ʻana o nā ʻiʻo palupalu i ʻōlelo ʻia ma mua i iwi. Hoʻomaka pinepine kēia me ke ʻano o nā ulu ʻeha e like me ka puʻupuʻu ma ke kua, ka ʻāʻī, a me nā poʻohiwi. Ua kapa ʻia kēia mau puʻupuʻu he "flare-ups." Lilo kēia mau puʻupuʻu i iwi i ka hala ʻana o ka manawa. Hiki i kēia mau flare-ups ke hana pinepine ʻia i ke ola holoʻokoʻa.
| ʻAno hōʻailona | Wehewehena |
|---|---|
| Kaha hānau | ʻOi aku ka pōkole o nā manamana wāwae nui ma nā wāwae ʻelua ma mua o ka maʻamau a ua huli ʻia i loko i nā manamana wāwae ʻē aʻe. |
| Nā lapalapa ahi | ʻIke ʻia nā puʻupuʻu ʻeha ma ke kino (pinepine ma ka ʻāʻī, nā poʻohiwi, ke kua). Hiki i kēia mau puʻupuʻu ke mau no kahi o 6-8 mau pule a laila lilo i iwi. |
Nā kumu o ka hoʻoulu ʻana o ka maʻi ʻaʻai
He mea nui e hoʻomaopopo: ʻO kahi ʻeha liʻiliʻi, hāʻule ʻana, ʻoki ʻana, a i ʻole ka inikini (ʻoiai he inikini anesthetic no ka unuhi ʻana i ka niho) hiki ke lilo i kumu nui o kēia mau puʻupuʻu ʻeha (flare-ups). No laila, pono ke kanaka me kēia maʻi e makaʻala loa ma mua o ka hana ʻana i kekahi lāʻau lapaʻau. ʻOiai kahi maʻi viral hiki ke hoʻonui i kēia maʻi.
I ka wā o ka lapalapa ʻana o ka maʻi, hiki ke loaʻa nā hōʻailona e like me ka ʻeha, ka pehu ʻana, ka ʻoʻoleʻa o nā hono, ka malaise, a me ke kuni haʻahaʻa a puni nā puʻupuʻu.
He aha nā pilikia e hiki ke hana ma muli o kēia ʻano?
I ka lilo ʻana o nā ʻiʻo palupalu o ke kino i mau iwi, ua kaupalena ʻia ka neʻe ʻana, a hiki ke alakaʻi i nā pilikia like ʻole.
- Paʻakikī ka hanu ʻana: Inā lilo nā ʻiʻo o ka umauma i mau iwi, ʻaʻole hiki i nā māmā ke hoʻonui piha.
- Paʻakikī i ka ʻai ʻana: Inā ua kaupalena ʻia ka neʻe ʻana o ke ami o ka ʻāwae, lilo ia i mea paʻakikī ke wehe i ka waha a ʻai. Hiki i kēia ke alakaʻi i nā hemahema meaʻai.
- Ka nalowale o ke kaulike o ke kino: Paʻakikī i ka mālama ʻana i ke kaulike i ka wā e hele ana a noho ana paha.
- Paʻakikī i ka ʻōlelo ʻana
- Scoliosis
- Nā maʻi pinepine: Ma muli o ka nele o ka neʻe ʻana, aia ka nui o ka pilikia o nā maʻi e pili ana i ka ihu, ka puʻu, a me nā māmā.
- Ka pilikia o ka hōʻeha puʻuwai: I kekahi mau hihia, hiki i kēia ke hoʻopilikia i ka hana o ka puʻuwai.
Pehea e ʻike ai i ka maʻi?
ʻO ka maʻamau, kānalua ke kauka i kēia maʻi ke ʻike lākou i kēia mau hōʻailona nui ʻelua i ka wā o ka hoʻokolokolo kino—ka ʻokoʻa ma ka manamana wāwae nui a me nā puʻupuʻu ma ke kua a me nā poʻohiwi.
No ka hōʻoia ʻana he FOP kēia, hiki ke hana ʻia kahi hoʻāʻo koko kūikawā (hoʻāʻo genetic) e ʻike ai i ke kīnā genetic e hoʻoulu ai i ka maʻi.
He mea nui loa: Hiki ke kuhihewa pinepine ʻia ka FOP no ka maʻi ʻaʻai a i ʻole nā maʻi kakaikahi ʻē aʻe. No laila, inā hana ʻia kekahi mea e like me ka biopsy ma ke kānalua, hiki ke lilo i mea ʻino loa. No ka mea, hiki i ka ʻeha ke lilo i kumu nui o ka maʻi e ʻoi aku ka ʻino a me ka hoʻokumu ʻana o ka iwi hou. No laila, inā loaʻa i kāu keiki kēia mau hōʻailona, he mea nui e haʻi i ke kauka e pili ana i kou kānalua no ka FOP a ʻike i ke kauka i loaʻa ka ʻike ma kēia wahi.
Aia kekahi lāʻau lapaʻau no kēia?
ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no kēia maʻi i kēia manawa, a ua kaupalena ʻia nā koho lapaʻau.
Hiki i kāu kauka ke kuhikuhi i kekahi mau lāʻau lapaʻau, e like me corticosteroids, e kāohi i ka ʻeha a me ka pehu e kū mai ana i ka wā o ka flare-up.
Eia kekahi, i mea e maʻalahi ai nā hana o kēlā me kēia lā, hiki iā ʻoe ke loaʻa nā mea kōkua e like me nā kāmaʻa kūikawā a me nā pale lima me ke kōkua o kahi mea lapaʻau hana.
Leka Lawe-Home
- He maʻi laha ʻole ka FOP kahi e lilo ai nā ʻiʻo palupalu, me nā ʻiʻo, i loko o ke kino i iwi.
- ʻO kekahi o nā hōʻailona mua o kēia maʻi, ʻo ia ka pōkole o ka manamana wāwae nui a huli i loko ke hānau ʻia he keiki.
- ʻO kekahi hōʻailona nui e kū mai ana ma hope, ʻo ia ka ʻā ʻana o nā ʻeha ma luna o ke kino.
- He mea nui loa: ʻO nā ʻeha liʻiliʻi, hāʻule ʻana, nā inikini, a me nā biopsies nui loa hiki ke hoʻonui nui i ka maʻi.
- Inā kānalua ʻoe ua loaʻa i kāu keiki kēia mau hōʻailona, e ʻike koke i ke kauka a hōʻike i kou kānalua no ka FOP.
- ʻOiai ʻaʻohe lāʻau lapaʻau no kēia maʻi i kēia manawa, aia nā lāʻau lapaʻau e hiki ke kōkua i ka hoʻokele ʻana i nā hōʻailona a hoʻomaʻalahi i ke ola.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo