Ua nāwaliwali kou mau iwi? E kamaʻilio kākou e pili ana i ka Fibrous Dysplasia!

Ua manaʻo paha ʻoe e hiki i ko kākou mau iwi ke lilo i nāwaliwali a ulu aʻe ma nā ʻano ʻē? I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi iwi i lohe ʻole ʻia, akā he mea nui e ʻike. ʻO ia ka Fibrous Dysplasia . Loaʻa paha iā ʻoe kēia maʻi me ka ʻole o nā hōʻailona. No laila e kamaʻilio kākou e pili ana i ia mea me nā kikoʻī hou aku, ʻeā?

He aha ka dysplasia fibrous?

I ka ʻōlelo maʻalahi, ʻo ka fibrous dysplasia kahi maʻi laha ʻole kahi e ulu ai nā ʻiʻo fibrous (like me ka ʻeha) maʻamau ʻole i loko o ko mākou kino ma kahi o nā ʻiʻo iwi olakino. ʻAʻole ikaika kēia ʻiʻo hou e like me ka iwi maoli. ʻO ka hopena , lilo nā iwi i nāwaliwali a ʻoi aku ka maʻalahi o ka haki ʻana (fractures).

Hiki i kēia kūlana ke hoʻopili i kekahi iwi i loko o ke kino, akā ʻo ka mea maʻamau ka hoʻopili ʻana i:

• I ka iwi ʻūhā (ka iwi nui loa ma ka ʻaoʻao o luna o ko mākou wāwae - `femur`)
• I ka iwi ʻūhā (ka iwi ma lalo o ke kuli o ka wāwae - `tibia`)
• I nā iwi ʻaoʻao
• Iwi poʻo (me nā iwi maka)
• ʻO ka iwi lima luna (humerus)

ʻO ka nūhou maikaʻi, ʻaʻole kēia he maʻi kanesa (benign) . ʻO ia hoʻi, ʻaʻole ia e laha i nā iwi ʻē aʻe o ke kino. He mea hōʻoluʻolu iki kēlā, ʻeā?

Aia kekahi mau ʻano o ka dysplasia fibrous?

ʻAe, ua hoʻokaʻawale nā ​​kauka i kēia ʻano i ʻelua ʻano nui, ma muli o ka helu o nā iwi i hoʻopilikia ʻia:

1. Monostotic fibrous dysplasia: Hoʻokahi wale nō iwi e pili ana i kēia.

2. Polyostotic fibrous dysplasia: Hoʻopilikia kēia i kekahi mau iwi .

I kekahi manawa, inā loaʻa iā ʻoe kahi maʻi laha ʻole i kapa ʻia ʻo "McCune-Albright syndrome", hiki iā ʻoe ke loaʻa i ka polyostotic fibrous dysplasia. Hoʻopilikia kēia syndrome i ko mākou mau iwi, ʻili, a me ka "ʻōnaehana endocrine" (ka ʻōnaehana e hoʻomalu ana i nā hormones).

He aha nā hōʻailona o kēia?

ʻAʻole loaʻa nā hōʻailona o ka poʻe a pau me ka fibrous dysplasia. ʻO ia ke kumu he mea paʻakikī ke noʻonoʻo. ʻIke wale kekahi poʻe ua loaʻa iā lākou ke ʻano ma ka ulia pōpilikia ke loaʻa iā lākou kahi X-ray no kekahi kumu ʻē aʻe.

Eia nō naʻe, no ka poʻe e loaʻa ana nā hōʻailona, ​​​​hiki ke kū mai kēia mau mea:

• Nā haki iwi pinepine: ʻOiai ʻo ka hāʻule iki ʻana hiki ke haki ka iwi.
• ʻEha iwi: E ʻike paha ʻoe i kahi ʻeha ʻoi ma ka iwi i hoʻopilikia ʻia. Hiki ke hoʻonui mālie kēia ʻeha a i kekahi manawa e koʻikoʻi.
• Nā loli i ke ʻano o nā iwi: Hiki i nā iwi ke ʻike ʻia ua pehu a ulu paha i ke ʻano ʻē.
• Pehu ʻeha ʻole ma nā iwi ʻaoʻao: Loaʻa i kekahi poʻe kahi pehu e like me ka puʻu ma nā iwi ʻaoʻao, akā ʻaʻole ia e ʻeha.
• Scoliosis: Hiki i ke kuamoʻo ke piʻo i kekahi ʻaoʻao.
• Nā maka e ʻō aku ana:Inā pilikia nā iwi o ke poʻo, ʻike ʻia paha nā maka e puka i mua.
• ʻŌwiliwili ʻana o ka ʻauwae: Inā pilikia nā iwi ʻauwae, hiki i ka ʻauwae ke ʻōwili i kekahi ʻaoʻao.
• Ke neʻe nei a i ʻole ke kūlike ʻole o nā niho: Hiki i nā niho ke neʻe a ʻaʻole kūpono paha ma muli o nā loli o ka iwi ʻauwae.
• Paʻa ihu: Inā pili nā iwi maka, hiki iā ʻoe ke loaʻa i ka paʻa mau o ka ihu.

ʻO ka mea maʻamau, ʻoi aku ka nui o nā pilikia o ka poʻe i hoʻopilikia ʻia i nā iwi he nui (polyostotic) ma mua o ka poʻe i hoʻopilikia ʻia i hoʻokahi wale nō iwi (monostotic).

No ke aha i loaʻa ai ka dysplasia fibrous?

He mea paʻakikī iki kēia. Hoʻokumu ʻia kēia maʻi e kahi mutation maʻamau i loko o kahi gene i kapa ʻia ʻo `GNAS1` i loko o ko mākou kino ma hope o ko mākou hāpai ʻia ʻana i loko o ka ʻōpū. Hoʻopilikia kēia mutation genetic i kā mākou mau cell i kapa ʻia ʻo `osteoblasts`. He ʻano cell kūikawā nā Osteoblasts e kōkua i ko mākou mau iwi e ulu a hoʻokumu. No laila, ke hoʻopilikia ʻia ka hana o kēia mau cell, e hana ʻia nā ʻiʻo fibrous ʻē.

He mea nui loa: ʻAʻole maopopo i nā kauka ke kumu o kēia hoʻololi ʻana o ka genetic. Eia kekahi, ʻaʻole ia he hoʻoilina. ʻO ia hoʻi, inā loaʻa iā ʻoe kēia maʻi, ʻaʻole e hoʻoilina kāu mau keiki. ʻAʻole ia he hewa nou a i ʻole kekahi mea. No laila, mai hopohopo no ia mea, ʻae?

He aha nā pilikia e hiki ai i kēia ke hana?

ʻO ka pilikia nui i ʻike ʻia i ka fibrous dysplasia, ʻo ia ka maʻalahi o ka haki ʻana o nā iwi, no ka mea, ʻaʻole ikaika ka ʻiʻo i hana hou ʻia e like me ka iwi maoli.

Eia kekahi, inā pili kēia ʻano i nā iwi a puni nā maka a i ʻole nā ​​iwi a puni nā pepeiao, hiki ke loaʻa ka pilikia o ka lohe a i ʻole ka ʻike . No laila, he mea nui e makaʻala i kēlā mau hōʻailona.

Pehea e ʻike ai nā kauka i kēia?

Inā loaʻa iā ʻoe ka ʻeha o ka iwi a i ʻole nā ​​hōʻailona ʻē aʻe, pono ʻoe e ʻike i ke kauka. E nīnau mua ke kauka iā ʻoe e pili ana i kāu mau hōʻailona, ​​​​e like me ka lōʻihi o ko lākou noho ʻana. A laila e hana lākou i kahi hoʻokolokolo kino, ʻoiai ke nānā pono ʻana i kahi o ka ʻeha.

Eia kekahi, hiki ke hana i nā hoʻokolohua e like me:

• Nā hoʻāʻo koko a me ka mimi: Hana ʻia kēia mau hoʻāʻo e ʻike inā kiʻekiʻe kekahi mau pae enzyme. Inā kiʻekiʻe lākou, hiki i kēia ke hāʻawi i kahi hōʻailona e pili ana i ka ulu ʻana o nā ʻiʻo fibrous.
• Nā hoʻāʻo kiʻi:
• Nā kukuna X: Hiki i kēia ke ʻike i nā ʻiʻo ʻē aʻe, nā haki, a me nā loli i ke ʻano o nā iwi.
• Nā scan CT a me MRI: Hiki i kēia ke hana i nā kiʻi ʻoi aku ka maopopo a me nā kikoʻī ma mua o ka X-ray. Kōkua lākou i ke aʻo ʻana i ke kūlana o nā iwi me ka hohonu.
• Hoʻāʻo Biopsy:I kekahi manawa, inā kānalua ke kauka, e lawe lākou i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo ʻē a i ʻole ka iwi olakino a nānā iā ia ma lalo o kahi microscope. Ua kapa ʻia kēia he biopsy. ʻO kēia ka mea e hōʻoia maopopo ai i ka maʻi.

Pehea e mālama ʻia ai ka dysplasia fibrous?

Aia nā koho lapaʻau i kāu mau hōʻailona, ​​​​ke koʻikoʻi o ke kūlana, a pehea e pili ai i kou ola. ʻAʻole pono nā kānaka a pau i ke ʻano lapaʻau like.

ʻO nā ʻano lapaʻau nui penei:

1. Nānā: Inā ʻaʻohe ou hōʻailona, ​​a inā ʻaʻole koʻikoʻi kāu mau hōʻailona, ​​ʻaʻole paha e kuhikuhi kāu kauka i kekahi lāʻau lapaʻau kikoʻī, akā e nānā paha i kou mau iwi me nā nānā maʻamau (nā manawa hahai). ʻO kēia ke ʻike inā he loli.

2. Lāʻau lapaʻau: Hiki ke kuhikuhi ʻia kekahi mau lāʻau lapaʻau (e like me bisphosphonates) e hoʻoikaika i nā iwi, e hōʻemi i ka pilikia o nā haki, a kaohi i ka ʻeha.

3. Ke kākoʻo ʻana: I kekahi manawa e noi ʻia paha ʻoe e komo i nā kākoʻo e kākoʻo i nā iwi nāwaliwali, kōkua iā lākou e ulu pono, a pale i nā kīnā.

4. ʻoki kino:

• E hoʻoikaika i nā iwi e haki pinepine ana.
• E hoʻoponopono i nā iwi haki nui.
• Inā ua kekee ke ʻano o nā iwi, e hoʻoponopono.
• I kekahi manawa, pono paha e hana i nā "hoʻopili iwi." ʻO ke ʻano kēia o ka lawe ʻana i kahi ʻāpana iwi olakino mai kahi ʻāpana ʻē aʻe o ke kino a hoʻoili iā ia i loko o ka iwi i hoʻopilikia ʻia.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe ka ʻeha iwi ʻaʻole e nalo, e ʻike pono i ke kauka. ʻAʻole paha ma muli o ka fibrous dysplasia, akā he mea nui e ʻimi i ke kumu.

Inā ʻike mua ʻoe he dysplasia fibrous kou, e ʻike i kāu kauka inā:

• Inā manaʻo ʻoe e ʻoi aku ka ʻino o kāu mau hōʻailona.
• Inā manaʻo ʻoe ʻaʻole kōkua nā lāʻau lapaʻau āu e loaʻa nei.

He mea nui: No ka mea, hoʻonāwaliwali ka fibrous dysplasia i nā iwi, inā hāʻule ʻoe, paʻi i kahi mea paʻakikī, a i ʻole komo i kahi ulia kaʻa, e hele koke i ka lumi pilikia haukapila kokoke loa. Aia kahi pilikia kiʻekiʻe o ka haki ʻana.

Inā loaʻa iaʻu ka dysplasia fibrous, he aha kaʻu e manaʻo ai?

He mea paʻakikī ke hāʻawi i hoʻokahi pane i kēia nīnau, no ka mea, ʻokoʻa ka hopena o ka fibrous dysplasia i kēlā me kēia kanaka. Hiki i kekahi poʻe ke ola me ka ʻole o nā pilikia nui. Pono paha kekahi e akahele iki a loaʻa ka lāʻau lapaʻau.

Akā hoʻokahi mea e maopopo: he maʻi mau ka dysplasia fibrous.ʻO ia hoʻi, ʻaʻole ia he maʻi hiki ke ho'ōla loa ʻia, akā aia nā lāʻau lapaʻau e hiki ke kōkua i ka hoʻēmi ʻana i kona hopena i kou ola.

Ke ʻike ʻoe he loaʻa iā ʻoe kēia maʻi, e kahaha paha ʻoe a hopohopo iki. He mea maʻamau kēlā. Akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. E kamaʻilio ākea e pili ana i kēia me kāu kauka. E wehewehe ʻo ia iā ʻoe i ka mea e manaʻo ai a me nā lāʻau lapaʻau kūpono iā ʻoe.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻAe, e hoʻomanaʻo kākou i kēia mau manaʻo ma ke ʻano he hōʻuluʻulu manaʻo o ka fibrous dysplasia a mākou i kamaʻilio ai i kēia lā:

• He maʻi iwi laha ʻole ka fibrous dysplasia.
• Ma kēia , ua hoʻokumu ʻia nā ʻiʻo palupalu a palupalu ma kahi o ka iwi olakino.
• Hiki i kēia ke kumu e haki maʻalahi ai nā iwi.
• ʻAʻole paha e ʻike kekahi poʻe i kekahi mau hōʻailona .
• ʻAʻole kēia he maʻi ʻaʻai, a ʻaʻole hoʻi he mea hoʻoilina.
• ʻOiai ʻaʻohe lāʻau lapaʻau piha, aia nā lāʻau lapaʻau e kāohi i nā hōʻailona a hōʻemi i ka hopena i ke ola.
• Inā loaʻa iā ʻoe ka ʻeha o ka iwi a i ʻole nā ​​​​hōʻailona kānalua ʻē aʻe, e ʻimi pono i ka ʻōlelo aʻoaʻo lapaʻau.

Manaʻolana wau he kōkua kēia ʻike iā ʻoe. Inā he mau nīnau hou aku kāu e pili ana i kēia, mai kānalua e nīnau i kāu kauka. E noho olakino!

ʻO ka dysplasia fibrous, maʻi iwi, haki iwi, ʻeha iwi, gene GNAS1, olakino iwi, nā maʻi laha ʻole