E aʻo hou kākou e pili ana i ka Tuberous Sclerosis. Mai makaʻu, e kamaʻilio kākou!

I kekahi manawa i ko kākou ola, lohe kākou e pili ana i nā maʻi i hiki ʻole ke noʻonoʻo ʻia a he mea ʻē iki hoʻi, ʻeā? ʻĀ, he maʻi i lohe ʻole ʻia e ka poʻe he nui, akā he mea nui loa ia e ʻike, ʻo ia ka Tuberous Sclerosis Complex (TSC) , a i ʻole Tuberous Sclerosis wale nō. ʻO ka mea e hana ʻia ma kēia, ʻo ia ka ulu ʻana o nā puʻupuʻu ʻaʻole cancerous, a i ʻole nā ​​puʻupuʻu, ma nā ʻāpana like ʻole o kou kino, ʻoi aku hoʻi ma nā wahi e like me ka lolo, ka ʻili, nā puʻupaʻa, ka puʻuwai, a me nā māmā. He maʻi genetic kēia. Akā, mai hopohopo, e kamaʻilio mākou e pili ana i nā mea āpau me ka maopopo a me ka maʻalahi.

He aha ka Tuberous Sclerosis?

I ka ʻōlelo maʻalahi, he maʻi genetic laha ʻole ka tuberous sclerosis (TSC). Hiki iā ia ke hana i nā puʻupuʻu noncancerous e hana i nā ʻāpana like ʻole o kou kino, e like me kou lolo, ʻili, puʻupaʻa, puʻuwai, maka, a me nā māmā. He mea nui e hoʻomanaʻo ʻaʻole kēia mau puʻupuʻu he maʻi kanesa . ʻO ke ʻano kēia, ʻaʻole lākou he mau puʻupuʻu weliweli e laha ana mai kekahi ʻāpana o ke kino a i kekahi. Eia nō naʻe, hiki i kēia mau puʻupuʻu ke hana i nā pilikia olakino like ʻole, ma muli o kahi e loaʻa ai a me ko lākou nui.

ʻAʻole i hoʻopilikia nui ʻia kekahi poʻe e kēia maʻi. Hiki iā lākou ke ola maʻamau. Akā no kekahi poʻe, hiki ke ʻoi aku ka ʻino a hiki ke alakaʻi i nā pilikia like ʻole. Hoʻomohala mālie kēia maʻi. Hiki ke hoʻomaka kekahi mau hōʻailona i ka wā ʻōpiopio, akā hiki i kekahi ke hala nā makahiki e ʻike ʻia. No laila, pono i ke kanaka me kēia maʻi ke aʻo lapaʻau a me ka nānā ʻana no ke ola holoʻokoʻa.

ʻO wai ka mea i hoʻopilikia nui ʻia e kēia maʻi? Pehea ka maʻamau o ia mea?

ʻO ka tuberous sclerosis (TSC) kahi maʻi i loaʻa i ka wā hānau . Ma kahi o ka hapalua o nā keiki i ʻike ʻia me ke ʻano i ka wā e hiki ai iā lākou ma kahi o 7 mau mahina. Eia nō naʻe, i kekahi manawa ʻaʻole maopopo loa nā hōʻailona, ​​a ʻaʻole paha e ʻike ʻia no nā makahiki. ʻOiai inā ʻike ʻia ke ʻano i ka wā kamaliʻi, hiki ke ʻike ʻia nā hōʻailona hou i ko lākou lilo ʻana i poʻe mākua.

Hiki i kēia maʻi ke hoʻopilikia i kekahi, me ka nānā ʻole i ke kāne, ka lāhui, a i ʻole ka hui lāhui. ʻO ia hoʻi, ʻaʻohe hui kikoʻī i hiki ke loaʻa iā ia.

E noʻonoʻo i ke kakaʻikahi o kēia. He maʻi kakaʻikahi loa ka tuberous sclerosis (TSC). He 50,000 wale nō ka poʻe ma ʻAmelika Hui Pū ʻIa me kēia maʻi. Ma ka honua holoʻokoʻa, aia ma kahi o hoʻokahi miliona. No laila hiki iā ʻoe ke noʻonoʻo i ke kakaʻikahi o kēia maʻi.

Pehea ka hopena o ka tuberous sclerosis (TSC) i ke kino?

ʻO ka hopena nui o ka tuberous sclerosis (TSC) ʻo ia ka ulu pū ʻana o nā pūnaewele i loko o ke kino i mau puʻupuʻu liʻiliʻi (nā tumors). Hana pinepine kēia i loko o ka lolo . Eia kekahi, hiki iā ʻoe ke ʻike i nā loli i kou ʻili, ʻoiai i kou wā ʻōpiopio. ʻO ka ʻoiaʻiʻo, ʻo kēia mau loli ʻili ka hōʻailona mua e loaʻa ana i kekahi ka maʻi.

ʻAʻole wale kēlā, akā hiki i ka tuberous sclerosis (TSC) ke hoʻopilikia i kou puʻuwai a me nā puʻupaʻa. He mea maʻamau ka hana ʻana o nā ʻano puʻupuʻu like ʻole i loko o kēia mau ʻōpū. ʻAʻole maʻamau ka hana ʻana o nā puʻupuʻu ma nā wahi ʻē aʻe.

He aha nā hōʻailona? Pehea lākou e hōʻike ai?

Hiki ke ʻokoʻa loa nā hōʻailona o ka tuberous sclerosis (TSC) ma muli o ke kino a i ʻole ka ʻāpana kino i hoʻopilikia ʻia. Hiki ke hoʻokaʻawale ʻia nā hōʻailona i ʻekolu mau pūʻulu nui:

• Nā hōʻailona e pili ana i ka lolo
• Nā hōʻailona pili i ka ʻili
• Nā loli kūloko ʻē aʻe i loko o ke kino

E nānā kākou i kēia mau mea a pau.

Nā hōʻailona e pili ana i ka lolo

ʻIke ʻia nā hōʻailona e pili ana i ka lolo ke hana ʻia nā ʻōpū a i ʻole nā ​​​​​​tuber cortical (hamartomas) i loko o ka lolo ma muli o ka tuberous sclerosis (TSC). ʻOiai ʻaʻole kēia mau ʻōpū he maʻi kanesa, hiki iā lākou ke hōʻino i ka lolo a hoʻopilikia i ka hana o ka lolo. ʻO kekahi mau laʻana:

• ʻO ka astrocytoma cell nui subependymal (SEGA) : He mau puʻupuʻu kēia e hana ʻia ma ka ʻili o ka lolo, ʻoi aku hoʻi ma ka ʻili o nā lua liʻiliʻi i piha i ka wai (ventricles) i loko o ka lolo. Hiki i kēia ke ālai i ke kahe o ka wai cerebrospinal, e hoʻoulu ai i ka wai e hōʻiliʻili i loko a puni ka lolo. Ua kapa ʻia kēia maʻi he hydrocephalus .
• ʻO nā ʻōpū cortical (hamartomas) : He mau hui pūnaewele ʻaʻole cancerous kēia. Hoʻokumu ʻia kēia mau hui pūnaewele i loko o ka lolo, kokoke i kahi e pono ai lākou, akā ma ke ʻano haunaele iki. ʻO kēia no ka mea ua nui loa nā pūnaewele i hoʻokumu ʻia a ʻaʻohe wahi kūpono no lākou e ulu ai.

I ka manawa pinepine, hiki i ka tuberous sclerosis (TSC) ke hana i nā kūlana hou aʻe, a he mau hōʻailona pili pū kekahi:

• Nā hopu ʻana : He mea maʻamau loa kēia.
• Nā lohi o ka ulu ʻana a me nā kīnā noʻonoʻo : No ka laʻana, hiki i ke keiki ke lohi i ka ʻōlelo ʻana, ka hele ʻana, a me nā mea ʻē aʻe. Hiki nō hoʻi ke loaʻa nā pilikia aʻo.
• Nā kūlana e pili ana i ka ulu ʻana o ka lolo: Nā kūlana e like me ka autism spectrum disorder a i ʻole ka attention-deficit/hyperactivity disorder (ADHD) .

ʻOiai he mea maʻamau nā hopu ʻana a me nā maʻi noʻonoʻo me ka tuberous sclerosis (TSC), ʻaʻole e loaʻa i nā kānaka a pau me ka maʻi. Hiki nō hoʻi ke loaʻa nā hopu wale nō me ka ʻole o nā maʻi noʻonoʻo.

Nā hōʻailona pili i ka ʻili

ʻO nā hōʻailona ʻili ka hōʻailona mua o ka tuberous sclerosis (TSC). Wahi a nā loea he 90% o ka poʻe me ka maʻi e ʻike i hoʻokahi a ʻoi aku paha o kēia mau mea:

• Nā kiko lau lehu : ʻO kēia nā melanin i loko o ka ʻili.Nā wahi me ka pigmentation haʻahaʻa (ka pigment e hāʻawi ana i ka ʻili i kona kala). Ua like kēia mau kiko me nā lau hina. I kekahi manawa, he paʻakikī ke ʻike ʻia i ka poʻe me ka ʻili māmā. ʻĀlohilohi kēia mau kiko ma lalo o kahi ʻano kūikawā o ke kukui ultraviolet (UV) .
• Nā māka confetti : Ua like kēia me nā freckles. Eia nō naʻe, ʻoiai ʻoi aku ka ʻeleʻele o nā freckles maʻamau ma mua o ka ʻili a puni, ʻoi aku ka māmā o ke kala o kēia mau māka confetti ma mua o ka ʻili a puni. Hiki nō hoʻi kēia mau mea ke hana i ka wā ʻōpiopio.
• Nā fibromas maka : He mau ulu ʻaʻole kēia he kanesa e kū ana ma ka ʻili o ka maka. Ke nui lākou, a i ʻole ke kokoke kekahi i kekahi, hiki iā lākou ke ʻike ʻia he mau ʻano nui i kapa ʻia ʻo "plaques." ʻOi aku paha ka ʻeleʻele o ko lākou kala ma mua o ka ʻili a puni.
• ʻO nā fibromas maiʻa lima a me nā manamana wāwae : Ua like kēia me nā fibromas maka, akā hana ʻia lākou a puni a ma lalo paha o nā maiʻa lima o nā manamana lima a me nā manamana wāwae. ʻIke pinepine ʻia lākou i ka wā ʻōpio a hiki ke ulu aʻe i ke ola holoʻokoʻa.
• Nā ʻāpana Shagreen : ʻO kēia nā wahi o nā ʻiʻo fibrous e hana ʻia ma lalo o ka papa waho loa o ka ʻili (epidermis). Loaʻa pinepine lākou ma ke kua haʻahaʻa. Ua like lākou me ka ʻili o ka ʻalani a i ʻole ka pomelo.

E hoʻomanaʻo, ʻo ka ʻike wale ʻana i kēia mau kiko a i ʻole nā ​​puʻupuʻu ma kou ʻili ʻaʻole ia he manaʻo he tuberous sclerosis kou. He mea nui e nānā ʻia e ke kauka.

Nā loli kūloko ʻē aʻe i loko o ke kino

Hiki i nā ʻōpū a i ʻole nā ​​cysts e kū mai me ka tuberous sclerosis (TSC) ke kū mai ma nā wahi ʻē aʻe o ke kino. Hiki ke hana ʻia nā loli ʻē aʻe. ʻO kekahi o lākou:

• Nā loli o ka waha : Hoʻomohala ʻia nā fibromas (nā ʻōpū) i loko o ka waha, a me ka lua ʻana o nā niho ma muli o ka nalowale ʻana o ka enamel niho. ʻIke ʻia kēia mau loli i ka enamel niho i ka aneane o nā mea āpau me TSC. Hiki i nā ʻāʻī ke lilo i ʻeha a kahe ke koko ma muli o nā puʻupuʻu. Hiki i ka lua ʻana o ka enamel ke alakaʻi i nā lua.
• Nā cysts puʻupaʻa : Ke ulu kēia mau mea i loko o nā puʻupaʻa, hiki iā lākou ke hoʻopilikia i ka hana o nā puʻupaʻa. Hiki i nā hōʻailona ke komo pū me ka ʻeha ma ke kua a i ʻole ka ʻaoʻao, ke koko i loko o ka mimi, a me nā pōhaku puʻupaʻa. I kekahi manawa, hiki ke loaʻa ka hāʻule ʻana o nā puʻupaʻa a me kahi ʻano maʻi puʻupaʻa i kapa ʻia ʻo renal cell carcinoma .
• Nā puʻupuʻu o ka retina a i ʻole nā ​​​​aʻalolo optic : Hiki i kēia mau puʻupuʻu ke hana i nā pilikia ʻike, akā ʻaʻole maʻamau kēia.
• Nā puʻupuʻu puʻuwai (cardiac rhabdomyomas) : ʻOi aku ka koʻikoʻi o kēia i nā pēpē. E emi ana ka pilikia me ka makahiki. Hiki i nā puʻupuʻu nui ke ālai i ke kahe koko ma o ka puʻuwai, akā he mea maʻamau ʻole kēia.
• Nā puʻupuʻu māmā : Inā lilo kēia i mea koʻikoʻi, hiki iā lākou ke pilikia i ka hanu ʻana.

He aha ke kumu o ka tuberous sclerosis (TSC)?

He maʻi hoʻoilina ka tuberous sclerosis (TSC). ʻO ia hoʻi, ua hana ʻia ia e nā loli (nā mutations) i loko o kā mākou DNA . He nui nā pūnaewele i loko o ko mākou kino e māhelehele a pani ʻia e nā pūnaewele hou. Hoʻomalu ʻia kēia kaʻina hana e nā protein tumor-suppressing.

Hoʻomalu kēia mau protein i ka wikiwiki o ka māhele ʻana o nā cell a me ka nui o nā cell. E noʻonoʻo i ka mea e hana ʻia inā ʻaʻole kaulike kēia mau protein? A laila, hoʻomaka nā cell i nui loa, he nui loa, e ulu. Ke ʻole kahi e hele ai, ulu lākou ma waho o ke kaohi a hana i nā puʻupuʻu. ʻO ia ka mea e hana ʻia ma ka tuberous sclerosis.

He mea kēia i loaʻa mai nā hanauna mai?

Hiki i nā hoʻololi genetic e hoʻoulu ai i ka tuberous sclerosis (TSC) ke hana i ʻelua mau ʻano:

• Sporadic : He mau hewa kaulele kēia e kū koke ana ma hope o ka hāpai ʻana (ʻo ia hoʻi, ma hope o ka hui ʻana o ka sperm a me ka hua manu e hana i kahi embryo). Ua like ia me kahi typo i loko o kahi puke e paʻi ʻia ana. ʻOi aku ka maʻamau o kēia ma mua o nā hihia hoʻoilina.
• Hoʻoilina : Ma kahi o hoʻokahi hapakolu o nā maʻi tuberous sclerosis (TSC) i hoʻoilina mai kahi makua mai.

Pehea e ʻike ʻia ai ka tuberous sclerosis (TSC)?

Hoʻokaʻawale nā ​​loea i nā hōʻailona a me nā ʻōuli o ka maʻi i ʻelua mau māhele nui: nā hiʻohiʻona nui a me nā hiʻohiʻona liʻiliʻi . I mea e ʻike pono ʻia ai me ka tuberous sclerosis (TSC), pono ʻoe e loaʻa i ʻelua a ʻoi aku paha nā hiʻohiʻona nui. No ka mea hiki ke ulu aʻe nā hōʻailona i ka hala ʻana o ka manawa, hiki i ke kauka ke hoʻokaʻawale i kou kūlana ma ke ʻano he "TSC hiki" inā hoʻokahi wale nō hiʻohiʻona nui a ʻelua paha hiʻohiʻona liʻiliʻi.

Nā hiʻohiʻona nui

• Ma ka liʻiliʻi he ʻekolu mau kiko lau lehu (pono kēlā me kēia kiko ma ka liʻiliʻi he 5 mm ka laulā).
• Loaʻa ma ka liʻiliʻi he ʻelua mau fibromas maka a i ʻole hoʻokahi palaki fibroma ma ka maka/poʻo.
• Loaʻa ma ka liʻiliʻi o hoʻokahi fibroma maiʻa lima a i ʻole manamana wāwae.
• Loaʻa ma ka liʻiliʻi hoʻokahi ʻāpana shagreen.
• Loaʻa ma mua o hoʻokahi lesion retinal.
• ʻO ke alo o nā ulu kikoʻī o nā ʻiʻo i loko a i ʻole ma luna o ka ʻili o ka lolo.
• He ʻano ulu kūikawā i loko o ka puʻuwai.
• Loaʻa kahi ʻano kikoʻī o ka puʻupuʻu non-cancerous (tumor benign) e hoʻopilikia ana i nā māmā, nā puʻupaʻa, a i ʻole nā ​​​​​​lymp node.

Nā hiʻohiʻona liʻiliʻi

• ʻEha ʻili konfeti.
• Loaʻa ʻehā a ʻoi aku paha nā lua i loko o ka enamel o nā niho.
• Ka loaʻa ʻana o ʻelua a ʻoi aku paha nā puʻu i loko o ka waha.
• Nā puʻupuʻu retinal.
• Loaʻa ma mua o hoʻokahi cyst i loko o nā puʻupaʻa.
• Nā puʻupuʻu ʻaʻole he maʻi ʻaʻai (nā ulu maikaʻi ʻole) ma nā ʻōpū a i ʻole nā ​​​​wahi ʻē aʻe.

Nā hoʻokolohua diagnostics

Ma muli o ka hiki i ka tuberous sclerosis (TSC) ke hana i nā ʻano hōʻailona a me nā hopena like ʻole, nui nā hoʻokolohua e hiki ke hana ʻia. E ʻokoʻa kēia mau hoʻokolohua ma muli o kāu mau hōʻailona. Hiki i kāu kauka ke wehewehe maikaʻi i nā hoʻokolohua āu e pono ai a me ke kumu e hana ʻia ai lākou. Aia ma lalo kekahi o nā hoʻokolohua maʻamau no ka tuberous sclerosis (TSC). ʻO ka hoʻāʻo genetic ka hana hope loa i ka hōʻoia ʻana i kahi hōʻailona TSC a me ka ʻike ʻana i ka mutation kikoʻī i loko o ka gene TSC.

Nā hoʻāʻo no nā hōʻailona e pili ana i ka lolo

Inā loaʻa iā ʻoe nā hōʻailona e pili ana i ka lolo, ʻoiai inā loaʻa iā ʻoe nā hopu ʻana (a inā he hōʻike e loaʻa ana paha iā ʻoe nā hopu ʻana), ʻoi aku ka nui o kou makemake e loaʻa i nā kiʻi diagnostic a me nā hoʻokolohua ʻē aʻe. ʻO kēia mau scan a me nā hoʻokolohua:

• CT scan (Computered tomography - CT scan)
• MRI scan (kiʻi resonance magnetic - MRI scan)
• EEG (Electroencephalogram - EEG) (Hoʻāʻo kēia i ka hana uila o ka lolo)

Inā kānalua ke kauka he kīnā noʻonoʻo kou, hiki iā lākou ke paipai i nā hoʻokolohua noʻonoʻo kikoʻī. Kōkua kēia mau hoʻokolohua i ka ʻike ʻana i nā pilikia me ke ʻano o ka hana ʻana o kou lolo a me nā kaʻina hana noʻonoʻo. ʻO ka maʻamau, pili kēia i nā pilikia a i ʻole nā ​​​​hana e pili ana i nā mea e like me ka hoʻomanaʻo, ka hoʻoholo ʻana, a me ka hoʻoholo ʻana.

Nā hoʻāʻo no nā hōʻailona e pili ana i ka ʻili

He mea nui loa ka hoʻokolokolo kino i ka ʻike ʻana i ka tuberous sclerosis (TSC). Hiki ke ʻike ʻia nā hōʻailona he nui o kēia ʻano i ka wā kamaliʻi. Aia kekahi mau hoʻokolohua e hiki ke kōkua i ke kauka e hōʻoia inā loaʻa iā ʻoe ka TSC. ʻO nā mea maʻamau:

• Ka hoʻokolokolo ʻana o ke kukui o Wood : He hoʻāʻo invasive ʻole kēia e hoʻohana ana i ka mālamalama ultraviolet e ʻike inā ʻālohilohi nā kiko lau lehu.
• ʻO ka biopsy ʻili : Lawe ʻia kahi ʻāpana liʻiliʻi o ka ʻili a nānā ʻia.

Nā hoʻāʻo no nā loli kūloko i loko o ke kino

He mea nui ka hoʻāʻo ʻana i ka genetics i ka ʻike ʻana i ka TSC. Ma waena o 75% a me 95% o nā maʻi he mutation i loko o nā genes TSC1 a i ʻole TSC2. Hiki ke loaʻa ka maʻi me ka ʻole o kahi mutation i ʻike ʻia, akā he mea kakaikahi kēia.

Hoʻomaka ka nui o nā loli e pili ana me TSC i ka wā e ulu ana ke kanaka ma ke ʻano he fetus i loko o ka ʻōpū. Hiki i nā kauka ke ʻike i kēia mau loli i kekahi manawa i ka wā o ka mālama maʻamau ma mua o ka hāpai ʻana, ʻoiai i ka wā o nā hoʻokolohua ultrasound , a i ʻole me nā scan CT a i ʻole MRI i hana ʻia ma hope koke o ka hānau ʻana.

He aha nā lāʻau lapaʻau no ka tuberous sclerosis (TSC)?

ʻAʻole hiki ke ho'ōla loa ʻia ka tuberous sclerosis (TSC). Eia nō naʻe,Hiki ke mālama ʻia ka hapa nui o nā hihia. ʻO nā koho lapaʻau e pili pinepine ʻia i ke ʻano o nā hōʻailona āu e loaʻa nei. ʻO nā lāʻau lapaʻau i hoʻohana pinepine ʻia:

• Nā lāʻau lapaʻau : Hiki i nā lāʻau lapaʻau ke kōkua i nā hōʻailona he nui o TSC. Hiki i kekahi mau lāʻau lapaʻau ke kāohi i nā hōʻailona e pili ana i ka lolo, e like me nā hopu ʻana. Hiki i nā lāʻau lapaʻau ʻē aʻe ke mālama i nā hōʻailona i hoʻokumu ʻia e nā ʻōpū a me nā ulu ʻana ma nā ʻāpana like ʻole o ke kino.
• ʻOki kino : I kekahi mau hihia, pono ke ʻoki kino e wehe i nā ʻōpū i hana ʻia i loko o ke kino.
• Nā lāʻau lapaʻau ʻili : Hoʻopau kēia i nā ʻāpana i ʻike ʻia o nā puʻupuʻu (piha a hapa paha) ma luna a ma lalo paha o ka ʻili.

Nā lāʻau lapaʻau

Ma muli o kāu mau hōʻailona, ​​hiki i kāu kauka ke kuhikuhi i nā lāʻau lapaʻau ʻē aʻe. Eia nō naʻe, hilinaʻi pinepine kēia i nā mea he nui, e like me kāu mau hōʻailona, ​​​​ka mōʻaukala olakino, nā pono pilikino, a me nā makemake.

Hiki i nā ʻano lāʻau like ʻole ke kōkua i ka mālama ʻana i nā hōʻailona o TSC. Aia nā lāʻau lapaʻau e hoʻolohi, hoʻōki, a hoʻemi paha i ka ulu ʻana o nā puʻupuʻu. ʻO kekahi lāʻau lapaʻau maʻamau ka mea e pale ai i nā hopu ʻana. ʻO nā hopu ʻana kekahi o nā hōʻailona maʻamau a weliweli hoʻi o TSC.

ʻoki kino

Hiki i nā ulu ʻana e kū mai ana me TSC ke hana i nā pilikia i kekahi manawa, ma muli o kahi e kū ai lākou. I kekahi manawa, pono ke ʻoki ʻana e wehe i nā ulu ʻana e hoʻopilikia nei i nā ʻōpū like ʻole a i ʻole nā ​​​​ʻōnaehana kino. Hiki i kāu kauka ke haʻi hou aku iā ʻoe e pili ana i nā ʻoki ʻana a me nā koho lapaʻau ʻē aʻe i loaʻa iā ʻoe.

Nā lāʻau lapaʻau ʻili

He nui nā hōʻailona o ka TSC e ʻike ʻia. Hiki i kēia ke hoʻohoka iā ʻoe, hilahila, a me ka hilahila. Hiki i ke kauka ʻili ke kōkua i ka hōʻemi a hoʻopau paha i nā loli ʻili e hele mai me ka TSC. ʻOiai he manawa pōkole kēia mau lāʻau lapaʻau, hiki iā lākou ke hana i kahi ʻokoʻa nui i kou olakino noʻonoʻo.

ʻO kekahi mau hiʻohiʻona o nā mālama dermatological no nā hōʻailona ʻili e pili ana me TSC:

• Cryoablation ( ka luku ʻia ʻana o nā ʻiʻo me ka hoʻohana ʻana i ke anu nui)
• Ka hoʻoponopono hou ʻana i ka ʻili laser (ka hoʻoponopono hou ʻana i ka ʻili laser )
• ʻO ka dermabrasion a i ʻole ka dermaplaning (ke kahakaha ʻana i ka ʻili o ka ʻili)
• ʻO ka Excision ( kahi hana liʻiliʻi, e like me ka wehe ʻana i kahi hōʻailona hānau)
• Nā kāpili ʻili

Nā pilikia/nā hopena ʻaoʻao o ka lāʻau lapaʻau

ʻOkoʻa loa nā hopena ʻaoʻao a i ʻole nā ​​pilikia o ka mālama ʻana iā TSC, ʻoiai he nui nā hōʻailona like ʻole a me nā koho lapaʻau. No kēia kumu, hiki i kāu kauka ke wehewehe maikaʻi iā ʻoe i nā hopena ʻaoʻao a i ʻole nā ​​​​pilikia āu e ʻike ai. Hiki iā ia ke haʻi iā ʻoe i ka lōʻihi o ka manawa e hoʻōla ai mai ka lāʻau lapaʻau.

Hiki ke hoʻemi ʻia a pale ʻia paha ka pilikia o ka tuberous sclerosis (TSC)?

ʻO kaʻoiaʻiʻo, ʻaʻohe ala e pale aku ai i ka tuberous sclerosis (TSC) . Inā loaʻa i kekahi o kou ʻohana (he makua a he kaikaina paha) ka TSC, hiki i ke aʻo ʻana i nā ʻano genetic ke kōkua iā ʻoe e hoʻomaopopo i ka pilikia o ka hoʻoilina ʻana o kāu keiki i ke kūlana a inā paha he mau hana hiki iā ʻoe ke hana e hōʻemi ai. Paipai pinepine nā loea i kēia aʻo ʻana.

He aha kāu e manaʻo ai inā loaʻa iā ʻoe ka tuberous sclerosis (TSC)?

He nui ka poʻe me TSC e pono ai nā hoʻokolohua kiʻi maʻamau, ʻoiai nā scan MRI, ma kahi o hoʻokahi a ʻelua paha i ka makahiki. Hoʻomaka pinepine kēia i ka wā kamaliʻi a hoʻomau a hiki i ka makahiki 21. Pono kekahi poʻe i nā scan maʻamau i ko lākou ola a pau, e nānā i nā ulu hou a i ʻole e nānā i nā ulu e kū nei.

Hiki ke ʻokoʻa loa nā hopena o ka TSC ma muli o kona koʻikoʻi:

• Nā hihia ʻoluʻolu : Pono paha ka poʻe me nā hihia ʻoluʻolu e lawe i ka lāʻau lapaʻau a loaʻa paha ka lāʻau lapaʻau i kēlā me kēia manawa, akā ʻaʻole pili nui ke ʻano i ko lākou ola. Hiki i kēia poʻe ke manaʻo e ola like me ka poʻe me ka ʻole o TSC.
• Nā hihia kaulike : I nā hihia kaulike, hiki i nā hōʻailona ke hoʻopilikia i kekahi. Eia nō naʻe, me ka mālama ʻana a me ka mālama olakino maʻamau, hiki ke mālama pinepine ʻia kēia mau hopena. Hiki i kēia poʻe ke manaʻo i kahi ola maʻamau a i ʻole kahi ola pōkole iki.
• Nā hihia koʻikoʻi : Loaʻa paha i kēia poʻe ke kīnā noʻonoʻo, ka maʻi epilepsy koʻikoʻi, a i ʻole nā ​​​​pilikia ʻē aʻe. ʻAʻole hiki i kekahi ke noho kūʻokoʻa, a i ʻole e koi paha i ka mālama lapaʻau akamai no ka hapa nui a i ʻole ko lākou ola holoʻokoʻa.

Pehea ka lōʻihi o ka hoʻomau ʻana o ka tuberous sclerosis (TSC)?

He maʻi mau loa ka tuberous sclerosis (TSC) a no ke ola holoʻokoʻa .

Pehea wau e mālama ai iaʻu iho?

Inā kuhikuhi kāu kauka i ka lāʻau lapaʻau, pono ʻoe e lawe pololei e like me ke kauoha. Mai hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau me ke kamaʻilio ʻole ʻana me kāu kauka. ʻO ka hoʻōki koke ʻana iā ia e hoʻonui paha i ka pilikia o ka hoʻi hou ʻana mai o kāu mau hōʻailona a i ʻole ka ʻino ʻana.

ʻOkoʻa paha nā ʻano ʻē aʻe āu e mālama ai iā ʻoe iho mai kēlā kanaka a kēia kanaka. Nui nā kumu e hoʻopilikia i kēia. ʻO kāu kauka ke kanaka maikaʻi loa e hāʻawi iā ʻoe i ke alakaʻi i nā mea āu e pono ai a hiki ke hana e mālama iā ʻoe iho a hoʻokele i kou kūlana.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe ka tuberous sclerosis (TSC), pono paha ʻoe e ʻike pinepine i ke kauka i kou ola a pau. ʻAe kēia i kāu kauka e nānā i kou kūlana a nānā i nā loli. He mea nui loa kēia mau mea ʻelua e pale aku i nā pilikia koʻikoʻi e hiki ke hana me TSC.

Āhea wau e hele ai i ka ʻOihana Pōpilikia (ETU) ?

Ma muli o kāu mau hōʻailona a me kahi o kou mau hopu ʻana, aia kekahi mau hōʻailona e hōʻike ana e pono koke ʻoe i ke kōkua lapaʻau. ʻO kekahi o nā mea maʻamau o kēia ʻo ia ke Status Epilepticus (SE) .

ʻO ka SE ke loaʻa iā ʻoe kahi hopu ʻana i ʻoi aku ma mua o ʻelima mau minuke, a i ʻole ʻelua a ʻoi aku paha mau hopu ʻana i ka lālani me ka ʻole o ka manawa e hoʻōla ai. He pilikia olakino hoʻoweliweli ola ka SE . Inā ʻoe me kekahi e loaʻa ana i ka hopu ʻana a loaʻa iā ʻoe kekahi o kēia mau hōʻailona, ​​​​pono ʻoe e kāhea koke i ka 911 (a i ʻole kāu helu pilikia kūloko).

Hiki ke ʻokoʻa nā hōʻailona ʻē aʻe e pono ai ke kōkua lapaʻau. Hiki i kāu kauka ke wehewehe maikaʻi iā ʻoe i nā hōʻailona āu e makaʻala ai a me nā mea hiki iā ʻoe ke hana inā ʻike ʻoe iā lākou.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai

ʻO ka tuberous sclerosis complex (TSC), a i ʻole tuberous sclerosis, he ʻano genetic kakaikahi ia e hoʻoulu ai i nā ulu ʻole cancerous e ulu i nā ʻāpana like ʻole o ke kino, ʻoi aku ka lolo a i ʻole ka ʻili.

Mai hopohopo. Me nā holomua o ka lāʻau lapaʻau hou a me ka ʻenehana kiʻi, hiki ke nānā pinepine ʻia a mālama ʻia kēia kūlana e like me ka mea e pono ai i ke ola holoʻokoʻa. Hiki i nā poʻe he nui me TSC ke ola lōʻihi a olakino.

Inā he mau nīnau a hopohopo paha kāu e pili ana i kēia, e kamaʻilio me kāu kauka. ʻO lākou ka poʻe hiki ke hāʻawi iā ʻoe i ka ʻōlelo aʻoaʻo pololei a maikaʻi loa.

ʻO ka sclerosis tuberous, nā maʻi genetic, nā puʻupuʻu lolo, nā kiko ʻili, nā hopu ʻana, nā lohi o ka ulu ʻana, ka lāʻau lapaʻau