Ua ʻike anei ʻoe e kūlou ana kou mau hono a neʻe iki aʻe ma mua o kou mau hoaaloha? A i ʻole ua ʻeha a ʻeha paha ʻoe i ka wā e pā ai ʻoe i kahi wahi liʻiliʻi? Manaʻo paha ʻoe, "ʻĀ... pēlā koʻu kino, ua like wau me kēia mai koʻu wā kamaliʻi." Akā, i kekahi manawa, hiki i kēia ke lilo i mau hōʻailona o kahi maʻi a mākou e kamaʻilio nui ʻole ai, akā pono mākou e ʻike. I kēia lā, e kamaʻilio mākou e pili ana i kekahi o ia ʻano maʻi, ʻo Ehlers-Danlos Syndrome, a i ʻole EDS no ka pōkole.
I ka ʻōlelo maʻalahi, he aha ka Ehlers-Danlos Syndrome (EDS)?
E noʻonoʻo i ko kākou kino me he hale i kūkulu nani ʻia. ʻO nā mea a pau o kēia hale, me nā piliki, nā paia, a me ke kaupaku, ua paʻa pū ʻia a paʻa pono ʻia e ka sima. Pēlā nō, ua pili, kākoʻo ʻia, a paʻa pono ʻia nā ʻōpū, nā iwi, nā ʻiʻo, a me ka ʻili o ko kākou kino e kahi pūnaewele kūikawā o nā ʻiʻo. Kāhea mākou i kēia mau ʻiʻo hoʻohui .
ʻO ke koa nui o kēia ʻiʻo hoʻopili he protein i kapa ʻia ʻo collagen . Ua like ia me ka sima. ʻO kēia collagen ka mea e hāʻawi i ka ikaika a me ke kūpaʻa i ko mākou ʻili, nā hono, a me nā kīʻaha koko.
Eia ka mea e hana ʻia ana i loko o ke kino o kekahi me ka Ehlers-Danlos Syndrome (EDS): Aia kahi loli genetic i ke ʻano o ka hana ʻana o ko lākou kino i kēia protein i kapa ʻia ʻo collagen. No laila, ʻaʻole lawa ka ikaika o ka collagen i hana ʻia, e like me ka sima kahiko. No laila he aha ka mea e hana ʻia? Me he mea lā e nāwaliwali ana ka hale, e nāwaliwali ana nā ʻiʻo pili i loko o ke kino. No laila hiki iā ia ke hoʻopilikia i nā wahi he nui o ke kino.
- Ke koko a me nā kīʻaha koko
- Nā iwi
- ʻO ke cartilage (ka ʻiʻo laumania ma waena o nā iwi)
- Momona
- Nā hui (nā hui)
- Nā ʻiʻo
- ʻIli
Aia kekahi mau ʻano nui o EDS?
ʻAe, ʻaʻole like ka EDS no nā kānaka a pau. Ua māhele ʻia ke ʻano i 13 mau ʻano nui e pili ana i ke ʻano o kona hopena i ke kino a me nā hōʻailona e hoʻoulu ai. Akā i kēia lā e kamaʻilio mākou e pili ana i kekahi o nā ʻano maʻamau e pono ai ʻoe e makaʻala.
| Inoa ʻano EDS | He hoʻolauna pōkole |
|---|---|
| ʻO ka Hypermobile EDS | ʻO kēia ke ʻano maʻamau. He palupalu loa ko lākou mau hono a he palupalu hoʻi. Manaʻo lākou ua 'paʻa' ʻia. Hoʻopuka pinepine nā hono i kahi leo 'kaomi' a hiki ke haki maʻalahi. |
| Nā EDS Kuʻuna | Ua like kēia me ke ʻano ma luna, akā hoʻopilikia nui ia i ka ʻili ma mua o nā hono. He lahilahi loa ka ʻili, he ʻano laholio, a hiki ke haehae maʻalahi a ʻeha. |
| ʻO EDS e like me ke ʻano maʻamau | E like me ka inoa e hōʻike nei, ua like loa ia me ka Classical EDS, akā aia kekahi mau ʻokoʻa iki i nā hōʻailona. ʻO ke kauka wale nō ke hiki ke ʻike i kēia mau mea. |
| ʻO ka EDS o ka puʻuwai-valvular | Hiki i kēia ke hoʻopili i ka ʻōnaehana cardiovascular a me nā valves puʻuwai, a me ke kumu ʻana i nā hōʻailona ma ka ʻili a me nā hono. |
| Nā EDS Vascular | He ʻano laha ʻole kēia a he mea weliweli hoʻi. Hoʻopilikia ia i nā kīʻaha koko a me nā ʻōpū o loko ma mua o nā hono. He nāwaliwali ko lākou mau paia a hiki ke pohā a haki paha. He ʻano kēia e pono ai ka nānā koke ʻia. |
He aha nā hōʻailona maʻamau o EDS?
I kēia manawa, ke noʻonoʻo nei paha ʻoe, "ʻAʻole maopopo iaʻu inā loaʻa iaʻu kēia." E nānā kākou i nā hōʻailona maʻamau o kēia ʻano. Akā e hoʻomanaʻo i hoʻokahi mea, ʻoiai he hoʻokahi a ʻelua paha o kēia mau hōʻailona kāu, ʻaʻole ia he manaʻo he EDS kou . Hiki ke ʻike ʻia kēia mau hōʻailona i nā maʻi ʻē aʻe. No laila, ʻo ka mea maikaʻi loa e hana ai, ʻo ia ke ʻike i ke kauka inā he kānalua kāu a hana i kahi hōʻailona paʻa.
| Hōʻailona | I ka ʻōlelo maʻalahi... |
|---|---|
| Nā hono hypermobile | ʻOi aku ka nui o ke kūlou ʻana o nā hono ma mua o ka maʻamau. Kapa kekahi iā lākou he 'hono pālua'. Ke neʻe mau nei nā hono e like me ka poʻohiwi, ke kuli, a me nā manamana lima. |
| ʻIli palupalu a laumania | He laumania loa ka ʻili, e like me ka velvet. A e like me ka pōpō palaoa pizza, hiki iā ʻoe ke hoʻolōʻihi iā ia e like me kou makemake, a hoʻi koke ia i kona wahi i ka wā i hoʻokuʻu ai ʻoe. |
| ʻIli palupalu a me nā ʻeha | ʻOiai he ʻeha liʻiliʻi, lōʻihi ka manawa e ho'ōla ai. He maʻalahi ka palaho, a i kekahi manawa e lahilahi nā palaho a ʻike ʻia ke kala ʻole. |
| ʻEha maʻalahi | I kekahi manawa, ʻike ʻia nā palapū polū ma ke kino me ka ʻole o ka pā ʻia ma kahi. Inā paha ʻoe e pā iki iā ia ma kekahi wahi, e lilo ia i polū. |
| ʻEha hui a me nā ʻiʻo | Aia ka ʻeha mau, e like me ka ʻeha, ma nā hono a me nā ʻiʻo. Hele mai kēia ʻeha a hele aku. |
| Luhi mau loa | Manaʻo luhi a ola ʻole i ka lā a pau ʻoiai ma hope o ka hiamoe maikaʻi ʻana. |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | Hiki paha iā ʻoe ke ʻeha i ka ʻōpū, ka pehu ʻana, ka paʻa ʻana o ka ʻōpū, a pēlā aku. Hiki i kekahi poʻe ke loaʻa i nā maʻi e like me ka Irritable Bowel Syndrome (IBS). |
| Ka pilikia o ka Hernias | ʻOi aku ke kiʻekiʻe o ka pilikia o ka hernia no ka mea nāwaliwali nā ʻiʻo pili a puni nā ʻiʻo. |
He aha ke kumu o ka EDS? He mea laha paha ia?
ʻAʻole, ʻaʻole hiki ke hoʻoili ʻia ka EDS mai kekahi kanaka a i kekahi . He kūlana genetic piha ia. ʻO ia hoʻi, ua hana ʻia e kahi loli genetic i loko o kā mākou mau genes. Loaʻa kēia kīnā i loko o nā genes e kuhikuhi ana iā mākou e hana i ka protein collagen a mākou i kamaʻilio ai ma mua.
Ua ʻike nā loea ma mua o 20 mau ʻano like ʻole o ka genetic e hoʻokumu ai i ka EDS. ʻO ka ʻano genetic āu e hoʻoholo ai i ke ʻano o ka EDS a me nā hōʻailona āu e ulu ai.
Hiki ke hoʻoili ʻia kekahi mau ʻano EDS mai nā mākua a i nā keiki. ʻO ke ʻano kēia, inā loaʻa i kekahi o nā mākua ke ʻano, aia kahi manawa e loaʻa pū ai i nā keiki. Eia nō naʻe, hiki i kekahi mau ʻano ke kū mai ma ke kino, me ka ʻole o ka mōʻaukala ʻohana.
Inā loaʻa i kekahi o kou ʻohana kēia maʻi, a inā he mau hōʻailona like kāu, he mea nui loa ia e kamaʻilio me ke kauka a, inā pono, e ʻimi i ka ʻōlelo aʻoaʻo genetic .
He aha nā pilikia e hiki ke loaʻa mai ka EDS?
ʻO ka pilikia maʻamau i kēia kūlana, ʻo ia ka dislocation . Hiki i kēia ke lilo i mea ʻeha loa. Aia kekahi mea nui loa e pono ai kākou a pau e hoʻomanaʻo ma ʻaneʻi.
Inā ʻoe e hemo i kahi hui, mai hoʻāʻo hou e hoʻopili hou iā ʻoe iho a i ʻole e hana kekahi i kekahi! E hōʻino wale kēia i ke hui, nā ʻiʻo a puni, a me nā aʻalolo. ʻO ka mea maikaʻi loa e hana ai, ʻo ia ke hele i ka haukapila kokoke loa i ka Emergency Department (ETU) i ka hikiwawe loa.
I kekahi mau ʻano koʻikoʻi, e like me ka vascular EDS, hiki ke loaʻa nā pilikia e hoʻoweliweli ai i ke ola. No ka laʻana, hiki ke pahū nā kīʻaha koko, e hoʻoulu ai i ke kahe koko i loko o ke kino a me nā kūlana koʻikoʻi e like me ka hahau ʻana .
ʻO nā pilikia ʻē aʻe paha:
- Scoliosis
- Nā pilikia o ka valve puʻuwai
- Nā pilikia o nā niho a me nā ʻāʻī
- Nā lālā kūlou
Ka mālama ʻana a me ka hoʻokele ʻana o EDS
ʻO ka mea mua, ʻaʻohe lāʻau lapaʻau no EDS. Akā, mai hopohopo. Hiki iā ʻoe ke kāohi i kāu mau hōʻailona, pale i nā pilikia, a ola i kahi ola maʻamau a maikaʻi. ʻO ka pahuhopu nui o ka lāʻau lapaʻau ka mālama ʻana i kāu mau hōʻailona.
- Hoʻōla kino: He mea nui loa kēia. Hiki i nā hoʻomaʻamaʻa e hoʻoikaika ai i nā ʻiʻo a puni nā hono ke kōkua i ka hōʻemi ʻana i ka ʻoʻoleʻa a me ka ʻeha o nā hono.
- Ke kau nei i nā pale lima kūikawā:Hiki i kāu kauka ke ʻōlelo aku i nā pale lima kūikawā e hāʻawi i ke kākoʻo hou aku a pale i nā hono nāwaliwali.
- Mālama kūikawā no ka ʻili: No ka mea he ʻili koʻikoʻi loa ka ʻili, he mea nui e pale iā ia ma ka hoʻohana ʻana i ka sunscreen i ka wā e hele ai i waho i ka lā a me ka hoʻohana ʻana i nā kopa palupalu a ʻaʻole hoʻonāukiuki.
Eia kekahi, ʻoi aku ka maikaʻi o ka noho mamao aku mai kekahi mau mea e hiki ai ke hōʻino i nā hono.
- Nā haʻuki hoʻokaʻaʻike
- Hoʻoikaika kino ikaika (holo, lele, a me nā hoʻoikaika kino ikaika ʻē aʻe)
- Ka hāpai kaumaha
ʻAʻole kēia manaʻo ʻaʻole hiki iā ʻoe ke hoʻoikaika kino. Hiki iā ʻoe ke kamaʻilio me kāu kauka e pili ana i nā hoʻoikaika kino kūpono i kou kino a ʻaʻole e hōʻino i kou mau hono, e like me ka ʻauʻau ʻana a i ʻole ke kaʻa paikikala.
Hiki ke paʻakikī ke noho me EDS i kekahi manawa. Hiki ke hoʻonāukiuki ka ʻeha mau a me ka luhi. He mea maʻamau kēlā. Akā hiki iā ʻoe ke hoʻomaopopo i kou mau palena, hana i nā hoʻololi e pono ai, a hoʻomau i ka hana ʻana i nā mea āu e aloha ai. E hoʻolohe i kou kino. Inā ʻike ʻoe i kekahi mau loli i kāu mau hōʻailona a i ʻole kou manaʻo, mai makaʻu e kamaʻilio me kāu kauka.
Leka Lawe-Home
- ʻO ka Ehlers-Danlos Syndrome (EDS) kahi maʻi genetic i hoʻokumu ʻia e ka nele o ka protein collagen.
- ʻO nā hōʻailona nui ka kūlou nui ʻana a me ka lele pinepine ʻana o nā hono, ka elasticity o ka ʻili, a me ka maʻalahi o ka palapū ʻana.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia, hiki ke mālama maikaʻi ʻia nā hōʻailona me ka hoʻoikaika kino, nā loli o ke ʻano o ka nohona, a me ke aʻo lapaʻau kūpono.
- Inā paʻi ʻoe i kahi hui, mai ho'āʻo e hoʻoponopono iā ʻoe iho, akā e hele koke i ka lumi pilikia o ka haukapila (ETU).
- Inā loaʻa iā ʻoe kēia mau hōʻailona a i ʻole he moʻolelo ʻohana kāu, he mea nui loa ia e ʻike i kāu kauka no ka hōʻoia pololei a me ka ʻōlelo aʻoaʻo.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo