ʻO Fibrous Dysplasia: E aʻo e pili ana i kēia maʻi hoʻonāwaliwali iwi laha ʻole

Ua noʻonoʻo paha ʻoe i kahi ʻeha iwi āu e ʻike nei? ʻAʻole pinepine mākou e noʻonoʻo nui i ka ikaika o ko mākou mau iwi. Akā e noʻonoʻo, he iwi ikaika i loko o kou kino e hoʻoheheʻe mālie ʻia mai loko mai, a ma kahi o ia mea ua piha i kahi mea e like me ke kaula, ʻiʻo ʻeha. ʻO ia ke ʻano o ke kūlana a mākou e kamaʻilio nei i kēia lā, ʻo Fibrous Dysplasia. He maʻi laha ʻole kēia. Mai hopohopo, e kamaʻilio mākou e pili ana i nā mea āpau me ka maʻalahi a me ka maopopo.

I ka ʻōlelo maʻalahi, he aha ka Fibrous Dysplasia?

ʻO ka Fibrous Dysplasia ka wā e pani ʻia ai ko kākou ʻiʻo iwi olakino a ikaika e ka ʻiʻo fibrous (like me ka ʻeha) ʻē aʻe. I nā huaʻōlelo ʻē aʻe, ma kahi e pono ai ka iwi maoli, e pani ʻia kahi ʻiʻo nāwaliwali a kaula. He aha ka mea e hana ʻia? No ka mea, ʻaʻole ikaika ka ʻiʻo hou e like me ka iwi maoli, lilo ka iwi i nāwaliwali loa. ʻOi aku ka maʻalahi o ka haki ʻana (haʻihaʻi) .

ʻOiai hiki ke loaʻa kēia ʻano ma kekahi iwi o ke kino, ʻike pinepine ʻia ia ma nā wahi aʻe:

• ʻūhā
• Iwi ʻūhā (tibia)
• Nā iwi ʻaoʻao
• Iwi poʻo a me nā iwi maka
• Iwi lima luna (humerus)

Akā eia ka mea nui e hoʻomanaʻo ai. ʻO ka Fibrous Dysplasia kahi maʻi ʻaʻole maʻi kanesa (benign). ʻO ia hoʻi, ʻaʻole ia e laha mai kekahi iwi a i kekahi. He mea hōʻoluʻolu nui kēlā, ʻeā?

ʻElua mau ʻano nui o ka fibrous dysplasia:

Hoʻokaʻawale nā ​​kauka i kēia maʻi e like me ka nui o nā iwi i loko o ke kino i hoʻopilikia ʻia. No laila, aia ʻelua ʻano nui.

He aha nā hōʻailona o kēia maʻi? Pehea ʻoe e ʻike ai?

ʻO kekahi o nā mea kupanaha e pili ana i ka Fibrous Dysplasia, hiki i kekahi poʻe ke loaʻa iā ia me ka ʻole o nā hōʻailona . E noʻonoʻo ʻoe e loaʻa ana iā ʻoe kahi X-ray no kekahi mea ʻē aʻe a ua ʻike ʻia ma ka ulia.

Akā inā ʻike ʻia nā hōʻailona, ​​​​​​e like paha lākou me kēia:

• ʻEha iwi: ʻO kēia ka hōʻailona nui. He ʻeha palupalu a ʻeha wale nō ia e hele mau mai ana mai kahi hoʻokahi. I kekahi manawa hiki ke ʻoi aku ka ʻino o kēia ʻeha i ka wā e hele ana a i ʻole e hāpai ana i nā mea kaumaha.
• Nā haki: E like me ka mea i ʻōlelo ʻia ma mua, no ka nāwaliwali o nā iwi, hiki i nā iwi ke haki maʻalahi i kekahi manawa, ʻoiai me ka hāʻule iki ʻana a i ʻole ka hahau ikaika.
• Hoʻololi ke ʻano o ka iwi: I ka ulu ʻana o nā ʻiʻo ʻē, ʻike ʻia paha ka iwi ua pehu. Hiki i kēia ke kūlou iki i ka wā o ka wāwae, a i ʻole kahi hoʻololi iki i ke ʻano o ka maka i ka wā o ka iwi maka.
• Hiki paha ke pehu ʻeha ʻole o nā iwi ʻaoʻao .
• Inā pili ka iwi kuamoʻo, hiki ke kūlou ʻia ke iwi kuamoʻo (scoliosis) .
• Inā pilikia nā iwi o ke poʻo, hiki ke hana i nā mea e like me nā maka puʻupuʻu, kahi loli i ke kūlana o nā iwi ʻā, ka neʻe ʻana o nā niho, a me ka ihu paʻa.

No ke aha lā kēia e hana nei?

Hoʻokumu ʻia kēia e kahi mutation i loko o kahi gene i kapa ʻia ʻo GNAS1 i loko o ko kākou kino. Hana ʻia kēia ma hope o ka hāpai ʻia ʻana o ke keiki i loko o ka ʻōpū. Ma muli o kēia mutation gene, ua hoʻopilikia ʻia ka hana o nā cell i kapa ʻia ʻo osteoblasts, nāna e kōkua i ka ulu ʻana o ka iwi. ʻO ia ka manawa e hoʻomaka ai kēlā ʻiʻo palupalu a fibrous e hana ma kahi o ka iwi olakino.

ʻAʻole maopopo i nā kauka ke kumu o kēia hoʻololi ʻana o ka genetic.

Pehea e ʻike ai ke kauka i kēia?

Ke hele ʻoe e ʻike i ke kauka me ka ʻeha mau o ka iwi, e nānā pono mua ʻo ia iā ʻoe. E nīnau ʻo ia iā ʻoe i nā nīnau he nui, e like me kahi o ka ʻeha, pehea ka lōʻihi o kona noho ʻana ma laila, a pehea kona manaʻo. A laila, hana paha ʻo ia i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.

• Nā hoʻāʻo koko a mimi paha: Nānā kēia i kekahi mau pae enzyme i loko o ke kino. I kekahi manawa, hiki i nā pae kiʻekiʻe o kēia mau enzyme ke hōʻailona o ka ulu ʻana o nā ʻiʻo maʻamau ʻole i loko o ke kino.
• Nā hoʻokolohua kiʻi: ʻO kēia nā mea nui loa.
• X-ray: Hiki i kahi X-ray ke ʻike maʻalahi i nā ʻano ʻē, nā haki, a me nā loli i ke ʻano o nā iwi.
• ʻO CT scan a i ʻole MRI scan: Hiki i kēia ke hāʻawi i kahi kiʻi maopopo a kikoʻī hoʻi o ka iwi a me nā ʻiʻo a puni.
• Biopsy: Inā kānalua ke kauka, e lawe lākou i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo ʻē ma lalo o ka anesthesia a nānā iā ia ma lalo o kahi microscope. Hiki i kēia ke hōʻoia i ka maʻi me ka maopopo 100%.

He aha nā lāʻau lapaʻau no kēia?

ʻO ke ʻano o ka mālama ʻana no ka Fibrous Dysplasia e pili ana i kāu mau hōʻailona, ​​​​ke koʻikoʻi o ke ʻano, a pehea e pili ai i kou ola. ʻAʻohe lāʻau lapaʻau hoʻokahi e kūpono i nā mea āpau.

ʻO nā ʻano lapaʻau nui:

1. Nānā: Inā ʻaʻohe ou hōʻailona a ʻeha paha, ʻaʻole paha e kuhikuhi kāu kauka i kekahi lāʻau lapaʻau, akā e noi wale iā ʻoe e hoʻi mai no ka nānā ʻana i kēlā me kēia manawa. ʻO ia hoʻi ke nānā ʻana e ʻike inā he mau loli i kou kūlana.

2. Lāʻau lapaʻau: Hiki ke hāʻawi ʻia kekahi mau lāʻau lapaʻau (ʻoi aku hoʻi nā bisphosphonates) e kōkua i ka hoʻoikaika ʻana i nā iwi a pale i nā haki. Hiki i kēia mau mea ke hōʻemi i ka ʻeha o ka iwi.

3. Ke kākoʻo ʻana: Inā loaʻa kēia ʻano ma ka iwi, ʻoi aku hoʻi ma ka wāwae o ke keiki e ulu ana, hiki ke ʻōlelo ʻia nā kākoʻo kūikawā e kōkua i ka ulu pono ʻana o ka iwi a pale i ke kūlou ʻana.

4. ʻoki kino:

• Inā haki kahi iwi (fractures), pono ke ʻoki kino e hoʻoponopono ai.
• Inā nāwaliwali loa ka iwi, ʻano ʻē, a ke kumu o ka ʻeha nui, hiki ke wehe ʻia ka ʻiʻo ʻē a hoʻololi ʻia me kahi kāpili iwi olakino a i ʻole e hoʻokomo ʻia nā koʻokoʻo hao e hoʻoikaika i ka iwi.

Āhea ʻoe e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe ka ʻeha mau o ka iwi me ke kumu ʻole , mai hoʻowahāwahā iā ia. E ʻike pono i ke kauka a kamaʻilio e pili ana.

Inā ʻike mua ʻoe he Fibrous Dysplasia kou, e kamaʻilio koke me kāu kauka inā ʻoe:

• Inā manaʻo ʻoe e ʻoi aku ka ʻino o kou mau hōʻailona.
• Inā manaʻo ʻoe ʻaʻole kōkua kāu mau lāʻau lapaʻau o kēia manawa.

Pōpilikia!

No ka mea, hoʻonāwaliwali ka Fibrous Dysplasia i nā iwi, ʻoi aku ka nui o kou haki ʻana i ka iwi ma mua o nā poʻe ʻē aʻe. No laila, inā hāʻule koke ʻoe, paʻi ikaika i ka iwi, a i ʻole komo i kahi ulia kaʻa, e hele pololei i ka Emergency Department (ETU) o ka haukapila kokoke loa me ka hoʻokaʻulua ʻole. No ka mea, inā ʻaʻole like me ia mai waho mai, aia paha he haki i loko.

Pehea e ola ai me kēia maʻi?

ʻAʻohe pane hoʻokahi i kēia nīnau, ʻoiai ʻokoʻa ka hopena o ka Fibrous Dysplasia i kēlā me kēia kanaka. Akā hoʻokahi mea e maopopo ai: he maʻi mau loa ia no ke ola holoʻokoʻa ʻaʻole hiki ke ho'ōla ʻia .

Akā, ʻaʻohe pono e makaʻu a kaumaha paha no ia mea. ʻAʻole kēia he maʻi make. Me ka mālama pono ʻana a me ka hoʻokele ʻana, hiki ke kāohi nui ʻia ka hopena o kēia maʻi i kou ola. ʻAʻole paha ʻoe e pono i kekahi lāʻau lapaʻau. Inā paha e pono ana ka lāʻau lapaʻau, hiki i nā ʻano lapaʻau o kēia wā ke kōkua iā ʻoe e kāohi i ka ʻeha, pale i nā haki, a ola i kahi ola maʻamau a hauʻoli.

Inā loaʻa iā ʻoe kēia maʻi, e kamaʻilio ākea me kāu kauka e hoʻomaopopo i ka mea e manaʻo ai e hiki mai ana ma muli o kou kūlana a me nā lāʻau lapaʻau kūpono loa iā ʻoe.