Maʻi Atrophy O Nā Nāʻiʻo

ʻOiai ʻaʻohe lāʻau lapaʻau no kekahi ʻano o ka maʻi muscular dystrophy, hiki i ka mālama ʻana i kekahi mau ʻano o ka maʻi ke kōkua i ka hoʻolōʻihi ʻana i ka manawa e hiki ai i kahi kanaka me ka maʻi ke noho nei i ka neʻe ʻana a me ke kōkua ʻana i ka ikaika o nā ʻiʻo o ka naʻau a me nā māmā. Ke hoʻomau nei nā hoʻokolohua o nā lāʻau hou.

E nānā mau ʻia nā kānaka me ka maʻi muscular dystrophy i ko lākou ola. Pono ko lākou hui mālama ke komo pū me kahi neurologist me ka ʻike ma nā maʻi neuromuscular, kahi loea lapaʻau kino a me ka hoʻōla hou ʻana, a me nā therapist kino a me nā ʻoihana.

Hiki paha i kekahi poʻe ke pono i kahi loea māmā (pulmonologist), kahi loea naʻau (cardiologist, kahi loea hiamoe, kahi loea i ka ʻōnaehana endocrine (endocrinologist), kahi kauka ʻoki orthopedic a me nā loea ʻē aʻe.

ʻO nā koho mālama e komo pū ana i nā lāʻau lapaʻau, ka lāʻau kino a me ka ʻoihana, a me nā kaʻina hana ʻoki a me nā mea ʻē aʻe. ʻO nā loiloi mau o ka hele ʻana, ka ʻai ʻana, ka hanu ʻana a me ka hana lima e hiki ai i ka hui mālama ke hoʻoponopono i nā lāʻau lapaʻau i ka holomua ʻana o ka maʻi.

Hiki i kāu kauka ke ʻōlelo aku:

ʻO nā lāʻau hou e komo pū ana me ka eteplirsen (Exondys 51), ʻo ia ka lāʻau mua i ʻāpono ʻia e ka Food and Drug Administration (FDA) e mālama pono i kekahi poʻe me ka Duchenne muscular dystrophy. Ua ʻāpono ʻia ia ma ke ʻano kūlana i ka 2016.

I ka 2019, ua ʻāpono ka Food and Drug Administration (FDA) i ka golodirsen (Vyondys 53) no ka mālama ʻana i kekahi poʻe me ka Duchenne dystrophy i loaʻa iā lākou kahi mutation genetic.

Hiki i kekahi mau ʻano o ka lāʻau lapaʻau a me nā hāmeʻa kōkua ke hoʻomaikaʻi i ka maikaʻi a i kekahi manawa i ka lōʻihi o ke ola i nā kānaka i loaʻa ka maʻi muscular dystrophy. ʻO nā hiʻohiʻona e komo pū ana:

Hiki paha ke pono i ka ʻoki ʻana e hoʻoponopono i nā contractures a i ʻole ka curvature spinal e hiki ke hana i ka hanu ʻana i ka paʻakikī. Hiki ke hoʻomaikaʻi ʻia ka hana naʻau me ka pacemaker a i ʻole kahi hāmeʻa cardiac ʻē aʻe.

Hiki i nā maʻi hanu ke lilo i pilikia i ka maʻi muscular dystrophy. No laila, he mea nui ia e hoʻokani ʻia no ka pneumonia a me ka mālama ʻana i nā pana influenza. E ho'āʻo e pale aku i ka launa pū ʻana me nā keiki a i ʻole nā ​​​​poʻe mākua i loaʻa kahi maʻi maopopo.

• Corticosteroids, e like me ka prednisone a me ka deflazacort (Emflaza), kahi e hiki ai ke kōkua i ka ikaika o nā ʻiʻo a me ka hoʻolōʻihi ʻana i ka holomua ʻana o kekahi mau ʻano o ka maʻi muscular dystrophy. Akā, hiki i ka hoʻohana lōʻihi ʻana o kēia mau ʻano lāʻau ke hoʻopilikia i ka kaumaha a me nā iwi nāwaliwali, e hoʻonui ana i ka pilikia o ka haki.

• ʻO nā lāʻau hou e komo pū ana me ka eteplirsen (Exondys 51), ʻo ia ka lāʻau mua i ʻāpono ʻia e ka Food and Drug Administration (FDA) e mālama pono i kekahi poʻe me ka Duchenne muscular dystrophy. Ua ʻāpono ʻia ia ma ke ʻano kūlana i ka 2016.

  I ka 2019, ua ʻāpono ka Food and Drug Administration (FDA) i ka golodirsen (Vyondys 53) no ka mālama ʻana i kekahi poʻe me ka Duchenne dystrophy i loaʻa iā lākou kahi mutation genetic.

• Nā lāʻau naʻau, e like me nā mea pale angiotensin-converting enzyme (ACE) a i ʻole nā ​​mea pale beta, inā hōʻino ka maʻi muscular dystrophy i ka naʻau.

• Nā hana hoʻoikaika a me nā hana hoʻonui ʻana. Hiki i ka maʻi muscular dystrophy ke kaupalena i ka paʻa a me ka neʻe ʻana o nā hui. Hoʻohui pinepine nā lālā i loko a hoʻopaʻa ʻia i kēlā kūlana. Hiki i nā hana hoʻoikaika ke kōkua i ka mālama ʻana i nā hui i ka paʻa e like me ka hiki.

• Hoʻoikaika kino. Hiki i ka hoʻoikaika kino aerobic haʻahaʻa, e like me ka hele ʻana a me ka ʻauʻau ʻana, ke kōkua i ka mālama ʻana i ka ikaika, ka neʻe ʻana a me ke olakino maʻamau. Hiki paha ke kōkua kekahi mau ʻano o nā hana hoʻoikaika. Akā, he mea nui ia e kamaʻilio mua me kāu kauka no ka mea hiki i kekahi mau ʻano o ka hoʻoikaika kino ke hōʻino.

• Nā kāʻei. Hiki i nā kāʻei ke kōkua i ka mālama ʻana i nā ʻiʻo a me nā tendons i ka paʻa a me ka paʻa, e hoʻolōʻihi ana i ka holomua ʻana o nā contractures. Hiki i nā kāʻei ke kōkua i ka neʻe ʻana a me ka hana ma o ka hāʻawi ʻana i ke kākoʻo no nā ʻiʻo nāwaliwali.

• Nā mea kōkua neʻe. Hiki i nā canes, nā mea hele a me nā kaʻa wili ke kōkua i ka mālama ʻana i ka neʻe ʻana a me ke kūʻokoʻa.

• Kōkua hanu. I ka nāwaliwali ʻana o nā ʻiʻo hanu, hiki i kahi hāmeʻa apnea hiamoe ke kōkua i ka hoʻomaikaʻi ʻana i ka hāʻawi ʻana i ka oxygen i ka pō. Pono kekahi poʻe me ka maʻi muscular dystrophy nui e hoʻohana i kahi mīkini e hoʻokau i ka ea i loko a ma waho o ko lākou māmā (ventilator).