He aha ka sclerosis tuberous a pehea e mālama ai

Anter

• Nā hōʻailona nui
• 1. ʻIli
• 2. ʻO ka lolo
• 3. Puuwai
• 4. Lungs
• 5. Nā hakuʻala
• He aha ke ola o ke ola
• Pehea e hana ai i ka lāʻau

ʻO ka maʻi sclerosis tuberous, a i ʻole ʻo ka maʻi ʻo Bourneville, kahi maʻi kūpilikiʻi ʻole i hōʻike ʻia e ka ulu pono ʻole o nā tumele benign i nā ʻano like ʻole o ke kino e like me ka lolo, nā puʻupaʻa, nā maka, nā akemāmā, ka puʻuwai a me ka ʻili, nā kumu e like me ka maʻi epilepsy, hoʻomohala hoʻomohala a nā cyst i nā puʻupaʻa, kaukaʻi ʻia i ka ʻāpana i hoʻopili ʻia.

ʻAʻohe lāʻau i kēia maʻi, akā hiki ke mālama ʻia me nā lāʻau e hōʻemi i nā ʻōuli, e like me nā lāʻau anti-seizure, e laʻa me ka psychology, physiotherapy a i ʻole nā ​​ʻoihana ʻoihana ʻoihana, i mea e hoʻomaikaʻi ai ke ola.

Aia kekahi maʻi ʻē aʻe e kumu i nā hōʻailona like me ka ulu ʻana o nā tumors i loko o ke kino, akā naʻe, pili wale i ka ʻili a ʻike ʻia ʻo neurofibromatosis.

Nā hōʻailona nui

Hoʻololi nā ʻōuli o ka maʻi maʻi tuberous e like me ka wahi o nā tumors.

1. ʻIli

• Nā kiko kukui i ka ʻili;
• Ka ulu ʻana o ka ʻili ma lalo a puni paha o ke kui;
• ʻO nā leona ma ka maka, ʻano like me ka huehue;
• Nā ʻula ʻulaʻula ma ka ʻili, e hoʻonui paha i ka nui a mānoanoa.

2. ʻO ka lolo

• Epilepsy;
• Hoʻolālā hoʻolālā a me nā pilikia aʻo;
• Hyperactivity;
• Hoʻoikaika;
• ʻO Schizophrenia a i ʻole autism.

3. Puuwai

• Palpitations;
• Arrhythmia;
• Manaʻo o ka pōkole o ka hanu;
• Puʻupuʻu;
• Pāleʻele;
• ʻEha ʻeha.

4. Lungs

• Mū kūmau mau;
• Manaʻo o ka liʻiliʻi o ka hanu.

5. Nā hakuʻala

• Mimi koko;
• Hoʻonui i ka pinepine o ka urination, keu hoʻi i ka pō;
• ʻO ka pehu ʻana o nā lima, nā wāwae a me nā kuʻekuʻe wāwae.

ʻO ka mea maʻamau, ʻike ʻia kēia mau ʻōuli i ka wā kamaliʻi a hiki ke hana ʻia ke kuhi ma o nā hoʻokolohua kūlohelohe o karyotype, cranial tomography a me ka magnetic resonance. Eia nō naʻe, aia kekahi mau hihia kahi e akahai loa ai nā ʻōuli a ʻike ʻole ʻia a hiki i ka wā makua.

He aha ke ola o ke ola

ʻO ke ala e ulu ai ka sclerosis tuberous he loli loa ia, a hōʻike wale paha i kekahi mau hōʻailona i kekahi poʻe a i lilo i palena nui no nā poʻe ʻē aʻe. Hoʻohui ʻia, ʻokoʻa ka nui o ka maʻi e like me ka mea i loli, a ke ʻike ʻia i ka lolo a me ka puʻuwai ʻoi aku ka nui o ke koʻikoʻi.

Eia nō naʻe, kiʻekiʻe ke kali o ke ola, no ka mea he mea maʻamau ʻole e ala aʻe nā pilikia e hiki ke hoʻoweliweli i ke ola.

Pehea e hana ai i ka lāʻau

ʻO ka mālama ʻana i ka sclerosis tuberous e pili ana i ka hōʻemi ʻana i nā ʻōuli o ka maʻi a me ka hoʻomaikaʻi ʻana i ke ola o ka mea maʻi. No laila, he mea nui e kiaʻi ʻia ke kanaka a he mau kūkākūkā maʻamau me ka neurologist, nephrologist a i ʻole ka cardiologist, e laʻa, e hōʻike i ka lāʻau maikaʻi loa.

I kekahi mau hihia, hiki ke hana i ka lapaʻau me nā lāʻau anti-seizure, e like me Valproate semisodium, Carbamazepine a i ʻole Phenobarbital, i mea e pale aku ai i ka hopu ʻana, a i ʻole nā ​​lāʻau ʻē aʻe, e like me Everolimo, e pale ana i ka ulu ʻana o nā tumors i ka lolo a i ʻole nā ​​puʻupaʻa, no ka laʻana. laʻana. I ke kumu o nā tumors e ulu ana ma ka ʻili, hiki i ke kauka ke kuhikuhi i ka hoʻohana ʻana o kahi hamo me Sirolimus, e hoʻoliʻiliʻi i ka nui o nā tumors.

Eia kekahi, pono ka physiotherapy, ka psychology a me ka ʻoihana hana e kōkua i ke kanaka e kū pono i ka maʻi a loaʻa kahi ola ʻoi aku ka maikaʻi.