Hāʻawi kēia ʻaoʻao i ka ʻike e pili ana i nā haʻawina haumana ʻo Ehlers Danlos Syndrome e hiki ai i ka poʻe i loli nui ʻia e kēia maʻi e loaʻa kā lākou mau moemoeā aʻo.
ʻAʻole lohe ʻo "Ehlers Danlos Syndrome" iā ia, ʻeā? A i ʻole kamaʻāina ʻoe i ka huaʻōlelo? Ua hālāwai paha ʻoe me nā poʻe me kēia maʻi maʻi a ʻike ʻole he aha ia.
Eia mākou e hoʻokuke nei iā ʻoe mai ka pouli ...
He aha ʻo Ehlers Danlos Syndrome (EDS)?
ʻO EDS kahi hui o nā maʻi hoʻoilina e hoʻopili a nāwaliwali paha i nā mea hoʻopili e kākoʻo ana i ka ʻili, nā hono, ka iwi, nā paia o nā kīʻaha koko, nā uaua, nā ligament, a me nā mea ʻē aʻe a me nā ʻano.
Nā kīnā i nā pūnaewele hoʻopili i nā hōʻailona a me nā ʻōuli o kēia mau ʻano e kū mai i nā hono liʻiliʻi a i nā pilikia hoʻoweliweli ola.
Kūpono paha ʻo Ehlers Danlos Syndrome no ke kīnā?
Aia nā pae o EDS, a inā he akahai kāu e ʻae ai iā ʻoe e hana a laila ʻaʻole paha ʻoe e kūpono no nā pono kīnā.
Eia nō naʻe, inā ʻaʻole hiki iā ʻoe ke hana ma muli o nā ʻōuli koʻikoʻi mai laila e kūpono ʻoe ma ke ʻano he kīnā a no nā pono kīnā ʻole ʻē aʻe e like me ka Insurance Security Disability Insurance (SSDI) a me ka Income Security Income (SSI).
Ua hoʻopuka mua ʻia kahi ʻatikala e pili ana i nā pono kīnā o luna, ʻo ia hoʻi, ka ʻInikua Pilikino Pilikino Pilikino (SSDI) a me ka Loaʻa kālā mālama mālama (SSI). He mau pōmaikaʻi lākou i hāʻawi ʻia e ke aupuni i ka poʻe kīnā ʻole, a inā kū ʻoe i nā koina āpau hiki iā ʻoe ke loaʻa pū kekahi mai kēia pono kīnā.
ʻO nā kānaka me ka EDS e makemake nei e hoʻonui i kā lākou aʻo ʻana i ke koleke, kulanui, a i ʻole papahana hoʻomaʻamaʻa hiki ke noi no nā haʻawina Ehlers Danlos a mākou i helu ai ma kēia ʻaoʻao. Hāʻawi kēlā me kēia haʻawina i nā koi ʻokoʻa āu e hālāwai ai e loaʻa iā lākou.
Me ka makemake ʻole, e hele kāua i kēia mau haʻawina haumana ʻo Ehlers Danlos Syndrome…
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Nā Kauka Hoʻolālā Ehlers Danlos Syndrome
ʻAʻole nui nā haʻawina haumana no kēlā me kēia kanaka e ʻehaʻeha nei iā EDS, akā lawa nō nā haumana kīnā kīnā ʻole hiki iā lākou ke noi. E kiʻi iā lākou ma lalo:
- Kālā Kālā Hoʻolālā RAREis EveryLife Foundation
- ʻO ka Palapala Hoʻolaha Hoʻohanohano ʻo Hannah Bernard
- ʻO ka Scholarship ʻO Bryson Riesch Paralysis Foundation (BRPF)
- ʻO NBCUniversal Tony Coelho Kālā Hoʻolālā
- ʻO ka Palapala Hoʻolālā Kālā Pono Karman Healthcare Mobility
- ʻO ka Palapala Hoʻolālā Kulanui ʻo Hannah Ostrea Memorial
- Nā Palapala Hoʻolālā ʻo McBurney no nā haumāna me ke kino kīnā
- ʻO ka ʻO Charlotte W. Newcombe Foundation Scholarships no nā haumāna me ke kino kīnā
Kālā Kālā Hoʻolālā RAREis EveryLife Foundation
Hoʻokumu ka EveryLife Foundation i ka RAREis Scholarship Fund e kōkua i kēlā me kēia kanaka e noho nei me kahi maʻi laha ʻole ma ke kākoʻo ʻana i kā lākou mau makemake hoʻonaʻauao. Hāʻawi ʻia ka haumana i kēlā me kēia makahiki a waiwai ʻia ma $ 5,000 i 35 mau mea loaʻa.
Pono nā mea noi aku ma mua o 17 mau makahiki, e noho ana i ʻAmelika Hui Pū ʻIa, a ʻike ʻia me kahi maʻi laha ʻole e like me ka Ehlers Danlos Syndrome (EDS). Aia kēia makana i waena o ka Ehlers Danlos Syndrome haʻawina haumana ma ke ʻano he maʻi maʻamau a hiki iā ʻoe ke noi no kēia makana.
Pono nā mea noi e hoʻolālā e hoʻopaʻa inoa a i ʻole ua kākau inoa ʻia i kahi kula kiʻekiʻe i ʻae ʻia i United States e alualu i kahi papahana laepua a puka puka paha. Aia nā hale aʻo i nā kula, nā koleke, a me nā kula ʻoihana a i ʻole nā kālepa.
ʻO nā koi ʻē aʻe e pili ana i kahi transcript o nā kaha a me nā palapala hōʻoia hōʻoia, kahi pepa e wehewehe ana i kāu mau pahuhopu a pehea e kōkua ai ka loaʻa ʻana i ka haumana iā ʻoe e hoʻokō iā lākou. Hāʻawi ʻia nā Scholarships ma muli o nā moʻolelo, nā alakaʻi alakaʻi, ke komo ʻana i ke kula a me nā hana kaiāulu, ka hana, ka hana ʻana i ka ʻoihana, a me ka nele kālā.
ʻO ka Palapala Hoʻolaha Hoʻohanohano ʻo Hannah Bernard
Hāʻawi ʻia kēia haʻawina haumana i kēlā me kēia kanaka e hakakā ana i nā kūlana ʻehaʻeha e like me ka Ehlers Danlos Syndrome (EDS), Complex Regional Pain Syndrome (CRPS), a me Small Fiber Neuropathy (SFN).
ʻO kēlā me kēia mea i ʻōlelo ʻia ma luna nā ʻehaʻeha a me nā poʻe ʻē aʻe ʻaʻole i helu ʻia ma aneʻi e makemake e ʻimi i kahi aʻo i ke kula kiʻekiʻe, ke koleke, ke kula nui, a i ʻole ke aʻo pūnaewele ʻana e hiki ke noi no ka haumana $ 600.
Pono ʻoe e hoʻopihapiha i kahi noi a me nā moʻolelo o 500 mau huaʻōlelo a i ʻole ka wehewehe ʻana iā ʻoe iho a pehea ʻoe e noho nei i kou ola maikaʻi loa me ka ʻeha mau loa a me ka loaʻa ʻana o kēia haʻawina haumana iā ʻoe e hoʻokō i kāu mau pahuhopu aʻo.
ʻO ka Scholarship ʻO Bryson Riesch Paralysis Foundation (BRPF)
Kākoʻo ka BRPF i nā haʻawina haumana ʻo Ehlers Danlos Syndrome i ka poʻe e ʻeha ana iā ia akā makemake nō ʻoe e hoʻonui i kā lākou aʻo.
ʻO nā kānaka me Ehlers Danlos Syndrome a i ʻole he keiki kīnā ko kā lākou keiki hiki ke noi no kēia kula. He $ 2,000 i $ 4,000 haumana i hāʻawi ʻia i ʻelua a ʻekolu paha o ia mau kānaka i ʻae inoa ʻia a i ʻole ma kahi papahana koleka ʻehā a ʻelua paha makahiki.
Pono ka mea noi e loaʻa kahi GPA liʻiliʻi loa o 2.5 me kahi essay o 200 mau huaʻōlelo a i ʻole e wehewehe ana i nā kumu e pono ai ka mea noi i ka haumana a me nā palapala kākau aʻo luna. Loaʻa ka haumana i ka poʻe ma ʻAmelika Hui Pū ʻIa akā e hāʻawi ʻia ka mea nui i nā mea mai Wisconsin.
ʻO NBCUniversal Tony Coelho Kālā Hoʻolālā
Ua kapa ʻia ma hope o Tony Coelho - kahi lunamakaʻāinana o ʻAmelika Hui Pū ʻIa - a lilo i ʻāpana o ka hāʻawi ʻoaʻoa Ehlers Danlos. Kōkua kēia makana i nā poʻe me ka maʻi e hoʻokō i kā lākou mau moemoeā aʻo, ua hāʻawi ʻo NBCUniversal i kahi makana makahiki makahiki mai ka 2015 i ka poʻe i hoʻopilikia ʻia me ke kīnā.
Hoʻonui pū ka haumana i nā kino kīnā ʻē aʻe pū kekahi a hāʻawi ʻia i ʻewalu mau haumāna laepua a me nā haumāna puka puka me nā kino kīnā e like me ka EDS akā makemake nō naʻe e alualu i kahi ʻoihana i ka launa kamaʻilio, ka pāpaho, a i ʻole nā mea leʻaleʻa.
E loaʻa i kēlā me kēia haumāna ka huina o $ 5,625 e kōkua ai i ka uhi ʻana i ke kumukūʻai o ka hoʻonaʻauao ma kā lākou kula ma hope o ke kula kiʻekiʻe.
Makemake i ka noi ʻana? E hālāwai me nā koi kūpono aʻe:
- Pono e hoʻokomo inoa ʻia nā mea noi noi ma ke ʻano he haumāna laepua a puka puka paha ma ke kulanui i ʻae ʻia i ʻae ʻia i United States e ke kau hāʻule o ka makahiki noi.
- Pono ʻoe e ʻike he kanaka me ke kino kīnā
- Pono e hoihoi i ka ʻimi ʻana i kahi kekelē i ke kamaʻilio ʻana, ka pāpāho, a i ʻole ka ʻoihana hoʻokipa - ʻoluʻolu nā mea nui āpau e noi.
- ʻOiai ʻaʻole ia e koi ʻia iā ʻoe e lilo i kamaʻāina US no ke koho ʻia ʻana no kēia ʻike haumana, pono ʻoe e kākau inoa ʻia i kēia manawa i ke koleke a i ʻole ke kulanui i ka United States.
E hoʻomanaʻo, hāʻawi ʻia kēia haʻawina haumana i kēlā me kēia makahiki a inā ʻaʻole hiki iā ʻoe ke hui a i ʻole lanakila i ka makahiki i kēia manawa hiki iā ʻoe ke nānā mau i ka makahiki e hiki mai ana a noi.
ʻO nā palapala ʻē aʻe no ka noi pūnaewele o ka NBCUniversal Tony Coelho Media Scholarship ʻekolu mau nīnau essay, kahi hoʻomau hou, nā palapala unofficial, a me kahi leka kākoʻo.
ʻO ka Palapala Hoʻolālā Kālā Pono Karman Healthcare Mobility
E like me ka inoa e hōʻike nei, no kēia poʻe ka poʻe ʻike kīnā ʻole e hoʻohana i kahi noho huila a i ʻole nā mea lawe lima ʻē aʻe e neʻe ai. Pono e hoʻopaʻa inoa i nā mea noi no kēia ʻike i kēia manawa ma kahi kula hope kula kiʻekiʻe ma United States a he 16 mau makahiki a ʻoi paha.
Pono ka mea noi e mālama i kahi liʻiliʻi CGPA o 2.0 e noʻonoʻo ʻia no ka haumana a pono e hāʻawi ʻia nā transcripts i ka wā o ka noi. E kākau ʻoe a hoʻouna i kahi moʻolelo, e hāʻawi i ka hōʻoia o ke kīnā o ka neʻe e pili ana i ka leka a ke kauka a me kahi kiʻi kiʻi o ʻoe iho e kau ʻia ma ka pūnaewele inā lanakila ʻoe i ka makana.
ʻO ka makana haumana $ 500 e hāʻawi ʻia i nā haumāna ʻelua, hāʻawi ʻia ia i kēlā me kēia makahiki inā ʻaʻole ʻoe i hala i kēia makahiki.
Ke haʻohaʻo nei ʻoe no ke aha ma aneʻi kēia haumana?
ʻĀ, ʻo ka poʻe me EDS koʻikoʻi e koi i nā noho huila a me ka hoʻohana ʻana i nā hāmeʻa neʻe e neʻe a inā ʻo ʻoe kekahi o lākou e hiamoe ʻole ma kēia haʻawina. Hāʻawi ka Karman Healthcare Mobility Disability Scholarship i hoʻokahi haumana Ehlers Danlos e kōkua i ka poʻe me ke kīnā.
ʻO ka Palapala Hoʻolālā Kulanui ʻo Hannah Ostrea Memorial
Ua hoʻokumu ʻia kēia haʻawina haumana no ka hoʻohanohano ʻana iā Hana Ostrea liʻiliʻi i make i kahi maʻi maʻi ʻōiwi loa i ka makahiki ʻekolu. ʻO ka haumana no nā haumāna e ʻeha nei i kahi kīnā koʻikoʻi, e like me ka Ehlers Danlos Syndrome, akā makemake nō e alualu i kahi papahana kekelē.
Hāʻawi ʻia ka haumana haumana i kēlā me kēia makahiki i nā haumāna ʻelua e loaʻa iā lākou ka makana $ 1,000 e pili ana i nā moʻolelo i waiho ʻia, ka ʻike kula kiʻekiʻe loa, a me ka lawelawe kaiāulu. ʻO kēia Kālā Hoʻolaha Kula ʻo Ke Kula Nui ʻo Hannah Ostrea kekahi o nā ʻumeke ʻo Ehlers Danlos Syndrome e kōkua i ka ʻimi ʻimi naʻau o nā poʻe e noho pū ana me ia.
ʻO nā koi e pono ai no ka haumana;
- Pono e kākau inoa i ka mea noi komo i kahi koleke accredited ma United States no kahi papahana kekelē ʻelua a ʻehā paha makahiki.
- He kamaaina ʻo ʻAmelika Hui Pū ʻIa a i ʻole he kamaʻāina kū kānāwai mau
- Mākua, ahonui, a i ʻole hoahānau o ka mea maʻi i ʻike ʻia me ka maʻi laha ʻole o ka lāʻau (e ola ana a i make paha). ʻO ka makahiki i ka manawa o ke kuhi no ke keiki i hoʻopilikia ʻia he 17 mau makahiki a ʻoi aku paha.
- Mālama i kahi GPA o 2.5 a ʻoi paha (GPA ʻaʻole noʻonoʻo ʻia no nā mākua)
- ʻAʻole i loaʻa kēia haʻawina haumana i ka wā i hala.
Nā Palapala Hoʻolālā ʻo McBurney no nā haumāna me ke kino kīnā
He haʻawina laulā kēia no ka poʻe e noho nei me kekahi ʻano o ke kīnā a i ʻole kekahi e like me ka Ehlers Danlos Syndrome, e hoʻolilo nei iā ia ma ke ʻano he ʻimi na ka Ehlers Danlos Syndrome.
ʻO ka McBurney Scholarships no nā haumāna me ke kino kīnā ka mea ma ke Kulanui o Wisconsin-Madison wale nō, ʻo ia hoʻi, nā haumāna e makemake ana e noi no kēia ʻike haumana pono e kākau inoa i kahi papahana laepua a puka puka paha ma ke kula nui.
Hiki iā ʻoe ke noi no ka haumana inā loaʻa iā ʻoe kahi maʻi kīnā e like me ka Ehlers Danlos Syndrome (EDS) a i kāu makahiki hope i ke kula kiʻekiʻe a makemake e kākau inoa i ke Kulanui o Wisconsin-Madison. Hiki iā ʻoe ke noi inā ua kākau inoa ʻia ʻoe i ke kulanui.
ʻO nā palapala ʻē aʻe e noi ai no ka haumana ʻelua palapala leka a me kahi palapala aʻo. Hāmama ia i nā kamaʻāina o ʻAmelika Hui Pū ʻIa, nā kamaʻāina paʻa, a me nā haumāna haole e makemake e hele pū i ka noi ma US.
ʻO ka ʻO Charlotte W. Newcombe Foundation Scholarships no nā haumāna me ke kino kīnā
Hāʻawi kēia kumu kālā i ke kālā hoʻonaʻauao no nā haumāna me ke kino kīnā e like me Ehlers Danlos Syndrome, cerebral palsy, autism, blindness, a me nā mea ʻē aʻe. Ua hala ka haumana ma ke ʻano he ʻimi na Ehlers Danlos Syndrome no ka mea hiki i nā poʻe me ke kīnā ʻole ke noi no ia.
ʻAʻole hāʻawi pololei ʻia nā haʻawina i nā haumāna pākahi akā hāʻawi ʻia lākou e nā koleke a me nā kula i hana pū ʻia me ka Newcombe Foundation.
ʻO nā kulanui i hui pū ʻia a me nā koleke ʻo:
- ʻO Edinboro University o Pennsylvania
- Ke Kula Nui ʻo Long Island Brooklyn Campus
- Kāleka ʻo McDaniel
- Ke Kulanui o New York
- Ke Kula Nui o Ursinus
- Kulanui o Behrend
- Kula Nui ʻo Brooklyn
- Kulanui ʻo Cabrini
- Columbia University
- Kulanuiʻo Delaware Valley
- Fairleigh Dickinson Kulanui
- Ke Kulanui o Gallaudet
- Ke Kulanuiʻo Penn State
- Ke Kulanui o ka Hale Pule
- Ke Kulanui o Villanova
Panina
Ke hoʻopau nei kēia i nā loiloi ʻo Ehlers Danlos Syndrome a e like me kaʻu i ʻōlelo ai ma mua, ʻaʻole nui o kēia mau haʻawina akā pono nā mea i ʻōlelo ʻia ma aneʻi. ʻO ka poʻe me ke kino kīnā e like me ka Ehlers Danlos Syndrome a me nā kīnā kīnā ʻole e kaupalena ʻia i kēia ʻano ʻano haʻawina haumana.
Hiki iā ʻoe ke hoʻonui i kāu ʻimi a noi no nā loiloi laulā e noi ai nā haumāna maʻamau, e like me ka loiloi ʻo Vanier Canada, MasterCard Foundation haʻawina, a me nā mea ʻē aʻe. ʻOiai kiʻekiʻe ko lākou mau koi inā manaʻo ʻoe hiki iā ʻoe ke hālāwai me lākou a laila hele i mua a noi no lākou.
Mai hoʻokomo i kāu mau hua āpau i loko o ka hīnaʻi hoʻokahi, noi no nā haʻawina haumana kīnā a me nā haʻawina laulā hoʻi e kiʻi i ke kākoʻo aʻo e like me kāu e loaʻa ai. He moeʻuhane kāu e alualu ai, mai ʻae i kāu kīnā ʻole e kaupalena iā ʻoe, hele, kiʻekiʻe kiʻekiʻe, a kū i kāu mau pahuhopu ʻoihana.
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hana manaʻo hoʻopuka
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