Ke manaʻo nei ʻoe ua ʻelemakule ʻoe ma mua o kou mau makahiki? ʻOiai he mea maʻamau ke manaʻo pēlā i kekahi manawa, ʻo ka ʻelemakule mua ʻana, a i ʻole ke kino e ʻelemakule wikiwiki ana, hiki ke hana ʻia e kahi maʻi genetic laha ʻole. ʻO kekahi o ia ʻano maʻi ʻo Werner Syndrome. E kamaʻilio kākou e pili ana i kēia me nā kikoʻī hou aku i kēia lā, no ka mea, he mea nui loa ka ʻike ʻana i ia mea.
He aha ka Werner Syndrome?
I ka ʻōlelo maʻalahi, ʻo ka Werner Syndrome kahi maʻi genetic laha ʻole e hoʻoulu ai i kou kino e ʻelemakule wikiwiki ma mua o ka mea i manaʻo ʻia. Ua kapa ʻia e kekahi poʻe ʻo 'adult progeria'. ʻAʻole ʻike pinepine ʻia nā hōʻailona a hiki i kou wā ʻōpio. ʻO ia hoʻi, e hoʻomaka ʻoe e ʻike i kahi ʻokoʻa ke oki ʻoe i ka ulu ʻana e like me kāu mau hoaaloha. A laila, i kou mau makahiki 20, e hoʻomaka ʻoe e ʻike i nā hōʻailona o ka ʻelemakule - a, i ka hala ʻana o ka manawa, nā maʻi e hele mai me ka ʻelemakule.
Akā, ʻaʻole kēia wale nō e pili ana i ka lauoho hina a me ka ʻili palupalu. ʻAʻole wale ka ʻelemakule e pili ana i ka hoʻololi ʻana i ke ʻano. Nui ka poʻe me ka Werner Syndrome e loaʻa i nā pilikia e hoʻoweliweli i ke ola i ko lākou mau makahiki 40 a me 50.
He aha kēia mau hōʻailona?
Ke loaʻa iā ʻoe ka Werner Syndrome, ʻike nui ʻia nā hōʻailona i kou wā ʻelemakule. Hiki paha iā ʻoe ke ʻike i nā hōʻailona o ka ʻelemakule ma mua o nā poʻe ʻē aʻe i kou mau makahiki, i kou mau makahiki 20. Eia kekahi o lākou:
Nā loli i ke ʻano
- Ka hina ʻana o ka lauoho a me ka hāʻule ʻana o ka lauoho: ʻAʻole wale kēia me ka lauoho ma ke poʻo, akā, nā kuʻemaka a me nā makamaka hoʻi.
- Ke piʻi nei ka leo i ke kiʻekiʻe a i ʻole ka palahalaha.
- Hoʻemi ʻia ka ʻiʻo adipose subcutaneous: Hiki i kēia ke hoʻohaʻahaʻa i ka ʻili.
- Ka emi ʻana o nā ʻiʻo.
- Pala niho mua ʻole.
- Ka ʻeleʻele ʻana o kekahi mau wahi o ka ʻili (hyperpigmentation) a i ʻole ka hoʻomālamalama ʻana o kekahi mau wahi (hypopigmentation).
- ʻUlaʻula o ka ʻili ma muli o ka hoʻonui ʻia ʻana o nā kīʻaha koko.
- Ka hoʻomālielie ʻana a paʻakikī paha o ka ʻili: Ua like kēia me ke ʻano i kapa ʻia ʻo scleroderma.
- He helehelena ʻūmiʻi a kaumaha hoʻi.
Nā pilikia olakino ʻē aʻe e puka mai ana mai loko mai o ke kino
Me ka Werner Syndrome, ʻaʻole ʻoe e nānā wale i ka ʻelemakule. ʻOi aku ka wikiwiki o kou kino ma mua o kou mau makahiki maoli. ʻO ia hoʻi, hiki iā ʻoe ke loaʻa i nā pilikia olakino ʻē aʻe ma mua o ka mea i manaʻo ʻia. ʻO kēia mau mea:
- ʻO ka maʻi diabetes ʻano 2: ʻO ka ʻoiaʻiʻo, ma kahi o 7 o 10 mau kānaka me Werner Syndrome e loaʻa i ka maʻi diabetes ʻano 2 i ka piha ʻana o 35 mau makahiki.
- Hypogonadism (hiki ʻole ke hana i loko o nā ovaries a i ʻole nā testicles).
- Nā ʻeha ʻili.
- ʻO ka osteoporosis (ka lahilahi o nā iwi).
- ʻO ke atherosclerosis.
- ʻO ka cataracts a i ʻole ka macular degeneration.
- ʻEha umauma (angina).
- Ka maʻi ʻōpū o ka puʻuwai.
- Ka hāʻule ʻana o ka puʻuwai `(ka hāʻule ʻana o ka puʻuwai)`.
Ka pilikia o ke kanesa
ʻOi aku ka nui o ka pilikia o ka poʻe me ka Werner Syndrome i ka loaʻa ʻana o kekahi mau ʻano maʻi kanesa. Eia kekahi laʻana:
- Ka maʻi ʻaʻai thyroid.
- Melanoma (ʻaʻai ʻili).
- ʻO ka Osteosarcoma (ka maʻi ʻaʻai iwi).
- ʻO ka sarcoma ʻiʻo palupalu.
He aha ke kumu o ka Werner Syndrome?
He maʻi hoʻoilina kēia. ʻO ia hoʻi, ua hoʻokumu ʻia e nā mutations i loko o kā mākou mau genes. Loaʻa ka Werner Syndrome i nā poʻe i loaʻa ʻelua mau kīnā i loko o ka gene WRN. ʻO ka maʻamau, ua hoʻoilina ʻia kekahi o kēia mau genes kīnā ʻelua mai ka makuahine a ʻo kekahi mai ka makuakāne.
Pehea ʻoe e ʻike ai i kēia? (Diagnosis)
E nānā kāu kauka i kekahi mau pae hoʻohālikelike e ʻike ai i ka Werner Syndrome. Hiki iā lākou ke kauoha i kēia mau hoʻokolohua:
- Nā hoʻāʻo hoʻoilina: E nānā i nā loli i loko o ka gene e hoʻoulu ai i ka Werner Syndrome.
- Nā kukuna X-ray: E nānā no nā loli o ka iwi a i ʻole nā pūpū.
Hiki i nā kauka ke ʻike i ka Werner Syndrome i kekahi manawa he 15 mau makahiki. Eia nō naʻe, hana pinepine ʻia ka ʻike ʻana i nā makahiki 30 a 40 paha. ʻO kēia no ka mea ua lōʻihi ka manawa e ʻike ʻia ai kekahi o nā hōʻailona kikoʻī o ka maʻi.
He aha nā lāʻau lapaʻau?
Hoʻōla ʻia ka Werner Syndrome ma muli o nā hōʻailona e ʻike ʻia. ʻO ia hoʻi, ʻaʻole pono kekahi lāʻau lapaʻau no nā mea āpau. Hiki i kekahi mau loea ke hana pū e hoʻonohonoho i kāu hoʻolālā lapaʻau. Eia kekahi laʻana:
- Nā Endocrinologists (nā loea hormone).
- Nā kauka maka ( nā loea maka).
- Nā Orthopedists (nā loea iwi a me nā hono).
ʻO nā lāʻau lapaʻau āu e loaʻa ai e komo pū paha me:
- Lāʻau lapaʻau no ka maʻi diabetes: E kāohi i kou pae kō koko.
- Nā aniani maka a i ʻole nā aniani hoʻopili: E hoʻoponopono i nā pilikia ʻike.
- Nā lāʻau lapaʻau no ka maʻi puʻuwai:Hoʻemi i ka pilikia o nā pilikia ma o ka kaohi ʻana i ka atherosclerosis.
- ʻOki kino: Inā he mau puʻupuʻu kanesa, e wehe iā lākou.
Hiki ke pale ʻia ka Werner Syndrome?
No ka mea he maʻi hoʻoilina kēia, ʻo ka mea pōʻino, ʻaʻole hiki ke pale ʻia ka Werner Syndrome.
Eia nō naʻe, inā ʻo ʻoe a me kāu hoa he mau mea lawe i ka gene no kēia maʻi, a makemake pū ʻoe e loaʻa nā keiki, makemake paha ʻoe e noʻonoʻo i kahi kaʻina hana i kapa ʻia ʻo preimplantation genetic testing (PGT). ʻO ka PGT kahi hui pū ʻana o ka hoʻāʻo genetic me ka in vitro fertilization (IVF). Pili kēia i ka hoʻāʻo ʻana i nā embryos ma mua o ko lākou hoʻokomo ʻia ʻana i loko o ka ʻōpū e hōʻemi i ka manawa kūpono o nā keiki e hoʻoilina i kēia mau kīnā genetic. Eia nō naʻe, he mau kaʻina hana paʻakikī kēia, no laila pono e hana ʻia nā hoʻoholo ma ke ʻōlelo aʻoaʻo lapaʻau wale nō.
He aha hou kāu e makemake ai e nīnau i kāu kauka?
Inā loaʻa iā ʻoe ka Werner Syndrome, he mea nui e nīnau i kāu kauka i nā nīnau āpau āu e loaʻa ai. Eia kekahi laʻana, hiki iā ʻoe ke nīnau i nā mea e like me:
- He manaʻo maikaʻi anei iaʻu e hana i kahi hoʻāʻo genetic no ka Werner Syndrome?
- He aha nā koho lapaʻau no ka Werner Syndrome?
- He aha kaʻu e hana ai e hōʻemi i koʻu pilikia o ka maʻi kanesa?
- He aha nā hōʻike nānā e pono iaʻu e hana ai e pale aku i nā pilikia o ka Werner Syndrome?
- He aha nā manawa kūpono e hoʻoilina ai kaʻu mau keiki i ka Werner Syndrome mai iaʻu?
- He aha nā manawa kūpono e loaʻa iaʻu kahi keiki ʻē aʻe me ka Werner Syndrome?
He aha nā kūlana ʻē aʻe i loaʻa nā hōʻailona like?
Ma waho aʻe o ka Werner Syndrome, aia kekahi mau kūlana ʻē aʻe e hoʻoulu ai i ke kino pōkole a me ka ʻelemakule mua. ʻO kēia mau mea:
- ʻO ka maʻi De Barsy
- ʻO ka maʻi Gottron
- ʻO ka maʻi Hutchinson-Gilford (ʻo ia ke ʻano o Progeria e hoʻopilikia ai i nā keiki ʻōpio)
- ʻO ka maʻi Mulvihill-Smith
- ʻO ka maʻi Rothmund-Thomson
- ʻO ka maʻi ʻino
He mau maʻi kakaikahi kēia a pau, no laila he mea nui loa ka loaʻa ʻana o kahi hōʻailona pololei.
He moʻolelo liʻiliʻi e pili ana i ka Werner Syndrome a pehea ka maʻamau?
Ua ʻike mua ʻia ka Werner Syndrome i ka hoʻomaka ʻana o nā makahiki 1900 e ke kauka i kapa ʻia ʻo Otto Werner. ʻO nā hōʻailona ʻelua āna i ʻike mua ai i nā poʻe maʻi ʻōpio, ʻo ia nā cataracts a me nā ʻāpana ʻeleʻele a ʻālohilohi ma ka ʻili.
He maʻi laha ʻole kēia. Mai ka wā i paʻi ʻia ai ka hōʻike mua o ka maʻi i ka makahiki 1904, ua hōʻike wale ʻia ma kahi o 800 mau hihia ma nā puke pai lapaʻau.
Ma ʻAmelika Hui Pū ʻIa, ua manaʻo nā loea he hoʻokahi i loko o 200,000 mau kānaka e loaʻa ana iā Werner Syndrome. Ma ka honua holoʻokoʻa, ua haʻahaʻa ka nui o ka maʻi e like me hoʻokahi i loko o hoʻokahi miliona.
Eia nō naʻe, ʻoi aku ka maʻamau ma Iapana a ma ka ʻāina ʻo Sardinia ma Italia. Ma laila, ma kahi o hoʻokahi i loko o 30,000 a i ʻole 50,000 mau kānaka i loaʻa i kēia maʻi. ʻO ke kumu o kēia, ua hoʻoilina ka nui o ka poʻe ma ia mau wahi i kahi hoʻololi genetic i hana ʻia i nā hanauna i hala.
Hiki ke paʻakikī ka ʻike ʻana ua loaʻa iā ʻoe a i ʻole kahi mea aloha ʻo Werner Syndrome. Hiki ke hoʻonāukiuki no ka mea ʻaʻohe lāʻau lapaʻau. Eia nō naʻe, hiki i ka lāʻau lapaʻau ke hōʻemi i ka pilikia o nā pilikia e hoʻoweliweli ana i ke ola.
ʻO ka mea hope loa, ka leka lawe home
He maʻi paʻakikī maoli ka Werner Syndrome, akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi.
- E kiʻi i ka lāʻau lapaʻau kūpono a me nā ʻōlelo aʻoaʻo: E kōkua kēia iā ʻoe e hoʻokele i kāu mau hōʻailona a hoʻomaikaʻi i kou ʻano ola.
- E hahai i kahi nohona olakino: E hiamoe pono, e ʻai i nā meaʻai momona, e hoʻohana i ka pale lā ke hele ʻoe i waho i ka lā, a e hoʻāʻo e hōʻemi i ke kaumaha. E kōkua kēia mau mea iā ʻoe e noho olakino.
- E ʻimi i ke kākoʻo: E nīnau i kāu hui lapaʻau e pili ana i nā hui kākoʻo. ʻAʻole paha ʻoe e manaʻo nui nei i ke kaomi i kēia manawa, akā e mālama i kēlā ʻike. He mea kōkua paha ia i ka wā e hiki mai ana.
ʻAʻole maʻalahi ka noho ʻana me kahi maʻi laha ʻole e like me kēia. Akā me ka ʻike kūpono, ke kākoʻo, a me kahi ʻano maikaʻi, e loaʻa iā ʻoe ka ikaika e hoʻokele ai i kēia huakaʻi.
ʻO ka maʻi Werner, nā maʻi genetic, ka ʻelemakule mua, ka progeria pākeke, ka gene WRN, nā pilikia olakino, ka pilikia o ka maʻi kanesa
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