Ua hoʻomaka anei kāu keiki liʻiliʻi e ʻōlelo a hele paha ma hope iki o nā keiki ʻē aʻe? He pilikia anei kona noho ʻana ma kahi hoʻokahi? Ke peahi nei ʻo ia i kona mau lima i kekahi manawa ma nā ʻano ʻē, a i ʻole ʻaʻole hiki iā ia ke nānā pololei iā ʻoe? He mea maʻamau iā ʻoe ma ke ʻano he makua ke makaʻu a hopohopo ke ʻike ʻoe i nā mea e like me kēia. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi maʻi genetic e hiki ke hoʻoulu i kēia mau hōʻailona, akā ʻaʻole i kamaʻilio nui ʻia i loko o ko kākou kaiāulu. Ua kapa ʻia kēia ʻo Fragile X Syndrome. E kamaʻilio maʻalahi kākou e pili ana i ia mea, ma ke ʻano e hiki ai i nā mea a pau ke hoʻomaopopo.
He aha ka Fragile X Syndrome, i ka ʻōlelo maʻalahi?
I ka ʻōlelo maʻalahi, he maʻi hoʻoilina kēia. ʻO ia hoʻi, ʻaʻole ia he mea i hana ʻia ma muli o ka hewa a i ʻole ka mālama ʻole o kekahi. He mea ia i hānau ʻia ai ke keiki. Hiki i kēia maʻi ke hoʻopilikia i ke aʻo ʻana o ke keiki, ke ʻano, ke ʻano, a i kekahi manawa ke olakino.
ʻO ka mea nui e hoʻomanaʻo ai ma ʻaneʻi, ʻoi aku ka nui o ka hopena o kēia maʻi i nā keikikāne ma mua o nā kaikamahine. E kūkākūkā mākou i ke kumu o kēia ma hope. Hiki i nā keiki me kēia maʻi ke loaʻa i nā pilikia aʻo a me nā palena o ka ulu ʻana o ka noʻonoʻo. Eia nō naʻe, hiki iā mākou ke kōkua i kēia mau keiki e hoʻomohala i ko lākou hiki piha ma o ka mālama kūpono, ka hoʻonaʻauao kūikawā, a me ka lāʻau lapaʻau .
He aha nā hōʻailona e hōʻike ai ke keiki ma kēia kūlana?
Hiki i ke keiki me Fragile X ke hōʻike i nā ʻano hōʻailona like ʻole. Hiki i kekahi mau keiki ke hōʻike iki i kēia mau hōʻailona, aʻo kekahi poʻe e hoʻopilikia nui ʻia. E nānā kākou i kēia papa e kōkua iā mākou e hoʻomaopopo pono i kēia mau hōʻailona.
| ʻAno hiʻohiʻona | Nā mea e ʻike ai |
|---|---|
| Nā pilikia e pili ana i ka ulu ʻana a me ke aʻo ʻana |
|
| Nā pilikia pili i ka naʻau a me ka noʻonoʻo | |
| Nā ʻano hiʻohiʻona kino |
ʻO ka mea nui, ʻaʻole e loaʻa i nā keiki āpau kēia mau ʻano āpau. A no ka mea he hoʻokahi a ʻelua paha o kēia mau ʻano i loaʻa i ke keiki, ʻaʻole ia he manaʻo he Fragile X ko lākou . Pono ʻoe e ʻike i ke kauka no ka ʻike pololei.
He aha ka pilina ma waena o Fragile X, Autism a me ADHD?
He mea nui loa nō hoʻi kēia. Hiki i kahi helu nui o nā keiki me Fragile X ke loaʻa i nā maʻi e like me ka autism a i ʻole ADHD (Attention Deficit Hyperactivity Disorder).
- Ma kahi o 40% o nā keiki me Fragile X e loaʻa paha iā lākou ka autism .
- A hiki i ka 80% paha ka nui o ka ADHD a i ʻole ADD (maʻi hoʻohaʻahaʻa i ka nānā ʻana).
Inā loaʻa i ke keiki ʻo Fragile X a me ka autism, ʻoi aku ka nui o ka loaʻa ʻana iā lākou o nā maʻi hopu, nā pilikia hiamoe, a me nā pilikia hana.
Pehea e hiki mai ai kēia maʻi? He maʻi hoʻoilina anei ia?
ʻAe, ua hoʻokumu ʻia kēia e kahi loli genetic i hoʻoilina ʻia mai kēlā hanauna a i kēia hanauna. E hoʻomaopopo iki kākou i kēia me ka maʻalahi.
Aia kekahi gene i kapa ʻia ʻo `FMR1` ma ka chromosome X i loko o ko kākou kino. ʻO ka hana nui o kēia gene, ʻo ia ka hana ʻana i kahi protein kūikawā (protein FMR) e kōkua ana i nā hunaola nerve i loko o ko kākou lolo e kamaʻilio pono kekahi me kekahi. He mea nui kēia protein no ka ulu ʻana o ka lolo olakino.
I loko o ke keiki me Fragile X, ʻo ka mutation i loko o ka gene `FMR1` ke kumu o ka hana liʻiliʻi a ʻaʻole paha o kēia protein koʻikoʻi. Hoʻopilikia kēia i ka ulu ʻana o ka lolo a me ka hana.
No ke aha i ʻoi aku ai ka pilikia o nā keikikāne?
E noʻonoʻo, he ʻelua mau chromosome X (XX) ko ke keiki wahine. No laila, inā he kīnā i loko o ka gene `FMR1` ma kekahi chromosome X, ʻo ka chromosome X olakino ʻē aʻe e hoʻoponopono pinepine i ka hemahema. No laila, hōʻike nā keiki wahine i nā hōʻailona liʻiliʻi a ʻoluʻolu loa paha.
Akā, hoʻokahi chromosome X a hoʻokahi chromosome Y (XY) ko ke keiki kāne. No laila, inā he kīnā i loko o ka gene `FMR1` ma kēlā chromosome X hoʻokahi, ʻaʻohe chromosome X ʻē aʻe e hoʻoponopono ai. ʻO ia ke kumu i ʻoi aku ai ka ʻino o nā hōʻailona o ka maʻi i nā keiki kāne.
Inā loaʻa i ka makuahine kēia ʻano kīnā, loaʻa i kekahi o kāna mau keiki (kāne a wahine paha) he 50% ka manawa e hoʻoilina ai. Inā loaʻa i ka makuakāne kēia ʻano, hiki iā ia ke hoʻoili wale aku i kāna mau keiki wahine.
Pehea e ʻike ai i kēia maʻi?
Hiki ke ʻike maopopo ʻia kēia maʻi ma o kahi hoʻāʻo genetic. Pili kēia i kahi hoʻāʻo koko maʻalahi. Hoʻohana ʻia kēia hāpana koko e nānā no kahi mutation i loko o ka gene `FMR1`.
ʻOiai i ka wā hāpai, hiki ke hana ʻia nā hoʻokolohua e hoʻoholo ai inā loaʻa i ka pēpē kēia maʻi.
- Amniocentesis: Ke lawe ʻana i kahi liʻiliʻi o ka wai amniotic mai ka ʻōpū o ka makuahine a hoʻāʻo iā ia.
- Chorionic Villus Sampling (CVS): Lawe ʻia kahi hāpana liʻiliʻi o nā pūnaewele mai ka placenta a hoʻāʻo ʻia.
Ma mua o ka hoʻoholo ʻana e pili ana i kēia mau hoʻokolohua, he mea nui loa ia e kūkākūkā i nā pono a me nā pōʻino me kāu kauka .
He aha kā mākou e hana ai e kōkua i ke keiki?
No ka mea, he maʻi hoʻoilina kēia, ʻaʻohe "pōkā kilokilo" e hiki ke ho'ōla loa iā ia. Akā, he nui nā mea hiki iā kākou ke hana e hoʻokele i nā hōʻailona o ke keiki, kōkua iā lākou e aʻo, a hoʻomākaukau i ke ala no kahi ola holomua. ʻO ka mea nui ma ʻaneʻi, ʻo ia ke komo ʻana i ka wā hikiwawe loa (komo mua).
| Nā ʻano hana kōkua | Wehewehena |
|---|---|
| Nā lāʻau lapaʻau |
|
| Hoʻonaʻauao kūikawā | Ke hana pū ʻana me ke kula e hoʻomohala i kahi hoʻolālā hoʻonaʻauao kūikawā e kūlike me ka hiki ke aʻo o ke keiki. |
| Nā lāʻau lapaʻau | |
| He wahi kākoʻo |
Pehea lā ka wā e hiki mai ana o kēia mau keiki?
ʻO kēia ka pilikia nui loa no nā mākua. ʻAʻole ʻo Fragile X kahi maʻi e hoʻoweliweli i ke ola. Ua like ke ola o kekahi me kēia maʻi me ke kanaka olakino maʻamau.
Me ke kākoʻo kūpono a me ke aʻo ʻana, hiki i nā poʻe he nui me kēia maʻi ke alakaʻi i nā ola holomua a hauʻoli. Pono paha kekahi i kekahi pae o ke kākoʻo a hiki i ka wā makua. Akā hiki i ka hapa nui ke hele i ke kula, heluhelu i nā puke, aʻo i nā mea hou, hana, a hana i nā mea ma o lākou iho. ʻO ka mea nui loa, ʻo ia ka ʻike ʻana i nā hiki o ke keiki a kākoʻo iā lākou e like me ia.
Leka Lawe-Home
- ʻAʻole hewa kekahi ka Fragile X Syndrome, he maʻi genetic ia i hoʻoilina ʻia mai ka hānau ʻana mai.
- Hiki ke hoʻopilikia nui ʻia nā hōʻailona i nā keikikāne ma mua o nā kaikamahine.
- Inā ʻike ʻoe i nā lohi o ka ulu ʻana, nā pilikia o ka ʻōlelo, nā pilikia aʻo ʻana, a i ʻole nā pilikia o ke ʻano o kāu keiki, e kamaʻilio me ke kauka e pili ana i ia mea.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia kēia maʻi, hiki ke mālama maikaʻi ʻia nā hōʻailona me nā lāʻau lapaʻau a me nā lāʻau lapaʻau.
- ʻO ka ʻike ʻana i ka maʻi i ka wā hikiwawe loa a me ka hāʻawi ʻana i ke keiki i ke kākoʻo e pono ai e kōkua nui iā lākou e hoʻokō i kahi wā e hiki mai ana holomua.
- Inā he kānalua kāu e pili ana i kāu keiki, ʻo ka mea maikaʻi loa e hana ai, ʻo ia ke nīnau aku i kāu pediatrician a i ʻole ke kauka ʻohana no ka ʻōlelo aʻo.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo