ʻO kēia ke ʻano o MS

Anter

• Kristen Pfiefer, 46
  ʻIke ʻia 2009
• ʻO Jackie Morris, 30
  Nānā ʻia: 2011
• Angela Reinhardt-Mullins, 40
  Nānā ʻia: 2001
• Mike Menon, 34
  Nānā ʻia: 1995
• ʻO Sharon Alden, 53
  Nānā ʻia: 1996
• ʻO Jeanne Collins, 63
  Nānā ʻia: 1999
• ʻO Nicole Connelly, 36
  Nānā ʻia: 2010
• ʻO Katie Meier, 35
  Nānā ʻia: 2015
• ʻO Sabina Diestl, 41, a me kāna kāne, ʻo Danny McCauley, 53
  Nānā ʻia: 1988

Hele mai ia i nā ʻano a me nā pae, i nā ʻano a me nā nui. Hōʻalo aʻe ia i kekahi, akā nā barela i nā poʻo ʻē aʻe.ʻO sclerosis maha (MS) - kahi maʻi kūpono ʻole, holomua e pili ana ma mua o 2.3 miliona mau kānaka ma ka honua holoʻokoʻa.

No ka poʻe ma lalo o 9, ʻaʻole wehewehe ʻo MS ʻo wai lākou, pehea lākou e hana ai, a pehea e ʻike ai ka honua iā lākou. Ua loli paha ko lākou ola mai ka wā i ʻike ʻia ai ka maʻi, akā kū hoʻokahi kā lākou mau moʻolelo iā lākou a ʻo lākou wale nō. ʻO kēia ke ʻano o MS.

Kristen Pfiefer, 46
ʻIke ʻia 2009

"ʻAʻole wau makemake i ka poʻe e nānā mai iaʻu a ʻōlelo," ʻ,, ʻo ia nō me MS. ʻAʻole pono mākou e hāʻawi iā ia i kēlā hana no ka mea e maʻi paha ʻo ia. ʻAʻole au makemake i ka poʻe e hoʻokolokolo ana e pili ana iaʻu. ʻIke wau i ka mea hiki iaʻu ke hana a me ka mea hiki ʻole iaʻu ke hana. ʻAʻole pono ka nāwaliwali. A manaʻo wau ʻo ia ka mea a ka poʻe he nui i ʻike ʻia e ʻike ai. A ʻaʻole pono ia. … Koho wau i ka mea e hoʻoikaika ai ia iaʻu. … He mana kou inā koho ʻoe e lawe. ʻAno like ia me ke kaua. I ke kaua, hiki iā ʻoe ke koho e hūnā a pule e hele ʻole ia iā ʻoe a i ʻole hiki iā ʻoe ke koho i ka hakakā. Koho wau i ka hakakā. ʻAʻole wau i manaʻo he mana ʻole wau i kēia kūlana. ʻAʻole wau i pili i ka noho huila i koʻu wā e hiki mai ana. Manaʻo wau hiki iaʻu ke hana kūʻē iā ia a hana wau i kēlā me kēia lā. ”

ʻO Jackie Morris, 30
Nānā ʻia: 2011

"Ma muli wale nō o kou nānā ʻole ʻana i ka maʻi ʻaʻole ia he manaʻo ʻaʻole maʻi ʻoe. Manaʻo wau ua maikaʻi loa wau e pili ana i ka hōʻike ʻole ʻana i ka hewa o kekahi mea ʻoiai ma loko o kēlā me kēia lā, paʻakikī ka hana ʻana i nā mea o kēlā me kēia lā. Manaʻo wau ʻo ka ʻāpana paʻakikī loa ia, ke ʻole inā loaʻa iā ʻoe nā hōʻailona kūwaho e like me ke anuanu o nā kānaka a i ʻole inā loaʻa iā lākou kekahi mea i ke kino hiki iā ʻoe ke ʻike hewa iā lākou. Inā ʻaʻole lākou e ʻike ia mea ʻaʻole lākou e noʻonoʻo aia he hewa maoli kāu iā ʻoe. ... Ua ʻae wau i mea e hoʻokau iaʻu e hana i nā hoʻololi i koʻu ola a maikaʻi a hana i nā mea aʻu e hana ʻole ai ma mua. No ka mea ʻoiai he RRMS kaʻu a lawe wau i ka lāʻau a me he mea lā ua kaohi ʻia ia, ʻaʻole ʻoe e ʻike maoli. ʻAʻole wau makemake e mihi i ka hana ʻole ʻana i nā mea no ka mea ʻaʻole hiki iaʻu ke hana iā lākou ke hiki. "

Angela Reinhardt-Mullins, 40
Nānā ʻia: 2001

"Manaʻo wau i ka manawa aʻu i ʻike ai ua lilo wau i kanaka" ʻae ". Ke hoʻomaka nei wau e ʻōlelo 'ʻaʻole.' ... Pono wau e hōʻoia ʻaʻohe mea hewa iaʻu no ka mea mālama mai nā poʻe iaʻu ʻaʻole he mea hewa iaʻu. … Aia kekahi mea hewa akā ʻaʻole hiki iā ʻoe ke ʻike ia a ʻo ia ka mea ʻoi loa. "

Mike Menon, 34
Nānā ʻia: 1995

"Iaʻu, aia kekahi ma waho kahi i ʻoi aku ka maikaʻi ma mua o aʻu e hana nei i nā mea ʻoi aku iaʻu. No laila ʻaʻole hiki iaʻu ke hoʻopiʻi maoli e pili ana i kaʻu hana i kēia manawa no ka mea ʻike wau aia kekahi ma waho aʻe me MS ʻoi aku ka maikaʻi, akā ke hana nei nō lākou i nā mea a lākou e hana ai. A ʻo ia ke ala maikaʻi loa e nānā ai iaʻu. Hiki ke ʻoi aku ka maikaʻi. Ua ʻike ka poʻe iaʻu i ka maikaʻi loa a ua ʻike ka poʻe iaʻu i kahi ʻano kokoke loa i koʻu maikaʻi. ʻElua mau makahiki i hala aku nei aia wau i kahi noho huila a ʻaʻole au e hele wāwae ana a ua loaʻa iaʻu kahi ʻāpana maikaʻi ʻole. A he 20 mau pila ma hope, ʻike ka poʻe iaʻu a like lākou, 'ʻAʻohe mea hewa me ʻoe.' ... ʻeha wau i ka lā holoʻokoʻa, i kēlā me kēia lā. ʻAno wale wau maʻa. ... Aia kekahi mau lā aʻu i makemake ʻole ai e ala aʻe a makemake wale e moe i laila, akā loaʻa iaʻu nā mea e hana ai. ʻAno ʻoe e kaomi iā ʻoe iho i kahi liʻiliʻi, a loaʻa iki ka hoʻokele. Inā wau e noho ma aneʻi, e mānoanoa wale ana nō a e māhuahua wale ana nō wau. ”

ʻO Sharon Alden, 53
Nānā ʻia: 1996

"ʻO MS ke nānā aku i nā mea āpau. Me he mea lā iaʻu. Me he mea lā ʻo ka hoaaloha o koʻu kaikuahine i hoʻomaka i ka holo ʻana i nā marathon ma hope o kāna kuhi. A ma hope o ka pau ʻana o kāna hana no kāna MS, ua hoʻomaʻamaʻa ʻo ia no ka marathon. ʻO ka poʻe hiki ʻole ke hele pololei a ʻaʻole hiki ke hele wāwae. He mau hoaaloha koʻu ma nā noho huila a ua hele lākou ma kēlā ʻano no kekahi manawa, no laila ke nānā aku nei e like me nā mea āpau. "

ʻO Jeanne Collins, 63
Nānā ʻia: 1999

"Manaʻo wau ua like ʻo MS me nā mea ʻē aʻe āpau. ʻO kēlā me kēia kanaka āu e launa pū ai aia paha kekahi mea e hana nei i ko lākou ola a ʻaʻole ʻoe ʻike wale e pili ana. A manaʻo wau ʻo MS kahi maʻi ʻike ʻole ʻia a hiki i kou komo ʻana i nā pae hope. ʻO ia ke kumu i manaʻo ʻole ai wau he ʻano maoli kā MS. ʻIke paha ʻoe i kahi kō. ʻIke paha ʻoe i kahi noho huila. Akā no ka hapa nui e like ʻoe me nā mea ʻē aʻe. E ʻehaʻeha paha ʻoe a ʻaʻohe mea a puni ʻoe e ʻike. ... He mea nui e ʻike i nā poʻe ʻē aʻe ʻaʻole pono ʻoe e hāʻawi. ʻAʻole pono ʻoe e luʻu i ke aloha a mai hele i waho a ʻoluʻolu ʻole i nā mea āu e leʻaleʻa nei.

ʻO Nicole Connelly, 36
Nānā ʻia: 2010

“I kekahi manawa manaʻo ʻia he pio i kou kino ponoʻī. ʻAʻole hiki ke hana i nā mea aʻu e makemake ai e hana a manaʻo me he mea lā ʻaʻole pono iaʻu e hana. Pono wau e hoʻomanaʻo iaʻu iho mai kaomi ʻana iaʻu iho i ka mamao loa, ʻaʻole e hoʻonui iā ia no ka mea uku wau i ke kumukūʻai. Manaʻo wau iho i ka noʻonoʻo ʻana i ka manaʻo o ka poʻe 'He naʻaupō wau' a i ʻole manaʻo ka poʻe he ʻona wau 'no ka mea aia kekahi mau manawa ke hana maikaʻi ʻole wau e like me nā poʻe ʻē aʻe. E aho wau e ʻike ka poʻe i ka mea hewa akā manaʻo wau ʻo ia ka mea paʻakikī iaʻu ʻaʻole maopopo i ka poʻe. "

ʻO Katie Meier, 35
Nānā ʻia: 2015

"He nui hewahewa ka hōʻike a ka poʻe e pili ana i ka MS. Manaʻo koke lākou ua hoʻoholo ʻia ʻoe e noho i kahi noho huila a me kēlā ʻano mea āpau, akā ʻaʻole pēlā ka hihia. [I kekahi manawa] hiki ke nānā aku me ke olakino holoʻokoʻa a ke ola nei ʻoe i kahi ola maʻamau, akā ke hakakā nei ʻoe me nā ʻano ʻōuli āpau. "

ʻO Sabina Diestl, 41, a me kāna kāne, ʻo Danny McCauley, 53
Nānā ʻia: 1988

"ʻAʻole hiki iaʻu ke neʻe iki. ʻAʻole wau lele. ʻAʻole make ia. … Hiki iā ʻoe ke hauʻoli me MS. ” - Sabina

"Ua hālāwai wau iā ia i ka manawa ʻo 23 a i kēlā manawa ʻaʻole ia e hele wāwae, akā ua aloha mākou i kekahi manawa. I ka hoʻomaka ua hoʻāʻo wau e hana a lilo i kahu akā lilo ia i hana manawa piha. ʻO ke kākoʻo no kekahi me ka maʻi holomua ke loli ke ola. " - Danny