Progeria: he aha ia, nā ʻano a me ka mālama ʻana

Anter

• Nā hiʻohiʻona nui
• Pehea e hana ai i ka lāʻau

ʻO Progeria, ka mea i kapa ʻia ʻo Hutchinson-Gilford Syndrome, kahi maʻi maʻi ʻōiwi ʻike ʻole ʻia e ka ʻelemakule wikiwiki ʻana, ma kahi o ʻehiku mau manawa ma mua o ka helu maʻamau, no laila, he 70 mau makahiki o kahi keiki 10 makahiki.

Hānau ʻia ke keiki me ka maʻi maʻi, he mea maʻamau wale nō ia, no ka mea, ke ulu nei ʻo ia, ma hope o ka makahiki mua o ke ola ʻana, ʻike ʻia kekahi mau hōʻailona e hōʻike ana i ka ʻelemakule mau, ʻo ia ka progeria, e like me ka lauoho. nalo, nalo o nā momona subcutaneous a me nā loli cardiovascular. No ka mea he maʻi ia e hōʻemi i ka ʻelemakule wikiwiki o ke kino, ʻo nā keiki me nā progeria he 14 mau makahiki no ke ola o nā kaikamahine a me 16 mau makahiki no nā keikikāne.

ʻAʻohe lāʻau i ka Hutchinson-Gilford Syndrome, eia naʻe ke ʻike ʻia nā ʻōuli o ka ʻelemakule, hiki i ke kauka lapaʻau ke koi aku i nā hana lapaʻau e kōkua ai e hoʻomaikaʻi i ke ola o ke keiki.

Nā hiʻohiʻona nui

I ka mua, ʻaʻohe hōʻailona a hōʻailona paha o ka progeria, akā naʻe, mai ka makahiki mua o ke ola, hiki ke ʻike ʻia kekahi mau hoʻololi e hōʻike ana i ka maʻi maʻi a pono e nānā ʻia e nā pediatricians ma o nā hōʻike. No laila, nā ʻano nui o ka ʻelemakule ʻōpio:

• Hoʻolālā hoʻomohala;
• Mīkini lahilahi me ka auwae liʻiliʻi;
• Hōʻike nā veins i ke poʻo a hiki i ka ihu septum;
• ʻOi aku ka nui o ke poʻo ma mua o ka maka;
• ʻO ka nalo ʻana o ka lauoho, me nā maka maka a me nā kuʻemaka, ʻoi aku ka maʻamau o ka nānā ʻana i ka pau ʻana o ka lauoho i 3 mau makahiki.
• Hoʻolālā accentuated i ka hāʻule a me ka ulu ʻana o nā niho hou;
• Kūpaka nā maka a me ka paʻakikī e pani i nā lihilihi maka;
• Ka nele o ka moekolohe moekolohe;
• Hoʻololi Cardiovascular, e like me hypertension a me ka puʻuwai puʻuwai;
• Hoʻolālā o ka maʻi diabetes;
• Nā iwi palupalu hou aʻe;
• ʻO ka hoʻohaunaele i nā hono;
• Leo leo kiʻekiʻe;
• Hoʻemi i ka hiki i ka hoʻolohe ʻana.

ʻOiai kēia mau ʻano, he ʻōnaehana pale pale maʻamau kā ke keiki me ka progeria a ʻaʻohe pili o ka lolo, no laila mālama ʻia ka hoʻomohala ʻike o ke keiki. Eia hou, ʻoiai ʻaʻohe hoʻomohala o ka moekolohe ma muli o nā loli hormonal, hana pololei nā hormones ʻē aʻe i pili i ka metabolism.

Pehea e hana ai i ka lāʻau

ʻAʻohe ʻano kikoʻī o ka mālama ʻana no kēia maʻi a, no laila, hōʻike ke kauka i kekahi ʻano hana e like me nā ʻano e ala aʻe. Ma waena o nā ʻano i hoʻohana pinepine ʻia o ka mālama ʻana:

• Hoʻohana i ka aspirin i kēlā me kēia lā: ʻae e mālama i ka lahilahi o ke koko, e hōʻalo i ka hoʻokumu ʻia ʻana o nā clots e hiki ai ke hōʻeha i ka puʻuwai a i ʻole nā ​​hahau ʻana;
• Nā kau Physiotherapy: kōkua lākou i ka hoʻokuʻu ʻana i ka mumū o nā hono a hoʻoikaika i nā mākala, e hōʻalo ana i nā haki maʻalahi;
• ʻOki kino: hoʻohana ʻia lākou e mālama a pale aku i nā pilikia koʻikoʻi, keu hoʻi i ka puʻuwai.

Hoʻohui ʻia, hiki i ke kauka ke kuhikuhi i nā lāʻau ʻē aʻe, e like me statins e hoʻoliʻiliʻi i ka kolesterol, a i ʻole nā ​​hormone ulu, inā kaumaha ʻole ke keiki, ʻo kahi laʻana.

Pono e ukali ʻia ke keiki me ka progeria e kekahi ʻoihana olakino, no ka mea, pau kēia maʻi i nā ʻōnaehana he nui. No laila, ke hoʻomaka ke keiki i ka ʻeha puʻupuʻu a me ka ʻeha, pono e ʻike ʻia ʻo ia e kahi orthopedist i mea e koi ai i ka lāʻau kūpono a hāʻawi i ke alakaʻi e pili ana i kahi e hoʻokoe ai i nā hono, e pale ana i ka hōʻeha ʻana o ka arthritis a me ka osteoarthritis. Pono ka cardiologist e hele pū me ke keiki mai ka manawa o ke kuhi, ʻoiai ka hapa nui o nā mea lawe o ka maʻi e make ma muli o nā pilikia o ka puʻuwai.

Pono nā keiki āpau me ka progeria i kahi papaʻai e alakaʻi ʻia e kahi nutrististist, e hōʻalo ai i ka osteoporosis e like me ka hiki a hoʻomaikaʻi i kā lākou metabolism. Hoʻomaopopo ʻia kekahi hana kino a haʻuki paha ma kahi o ʻelua mau manawa i ka pule, no ka mea hoʻomaikaʻi ia i ke kahe ʻana o ke koko, hoʻoikaika i nā mākala, hoʻohoka i ka noʻonoʻo a no laila ke ʻano o ke ola o ka ʻohana.

Kūkā ʻia e ka psychologist hiki ke lilo i mea pono no ke keiki e hoʻomaopopo i kāna maʻi a me nā hihia o ke kaumaha, a ʻo ka mea nui i ka ʻohana.