He ʻulaʻula/poni paha ko kāu keiki liʻiliʻi ma ko lākou ʻili? He "Port Wine Stain" paha ia!

Ua ʻike anei ʻoe i kahi kiko poni, ʻulaʻula, a poni paha a i ʻole kahi kīnā ma ka ʻili o kāu keiki hānau hou a keiki liʻiliʻi paha? I kekahi manawa ʻike ʻia kēia mau mea ma ka maka a me ka ʻāʻī. He mea maʻamau no nā mākua he nui ke hopohopo iki i ka ʻike ʻana i kahi mea e like me kēia. No laila, i kēia lā e kamaʻilio mākou e pili ana i kēia ʻano hōʻailona hānau. Ma nā ʻōlelo lapaʻau, ua kapa ʻia kēia ʻo `(Port Wine Stain)` a i ʻole `(Nevus Flammeus)`. He mea ʻē paha ke kani ʻana o ka inoa, akā e wehewehe maʻalahi kākou.

He aha kēia `(Port Wine Stain)`? E wehewehe pono kākou?

I ka ʻōlelo maʻalahi, he "Port Wine Stain" kahi hōʻailona hānau mau loa . ʻO ia hoʻi, ʻaʻole ia e mae wale. ʻIke mua ʻia ia ma ke ʻano he wahi pālahalaha, laumania, poni, ʻulaʻula, a poni paha ma ka ʻili o kahi keiki hānau hou. Eia naʻe, i ka hala ʻana o ka manawa, hiki i kēia wahi ke lilo i mea ʻeleʻele a piʻi iki a puʻupuʻu .

Ua loaʻa kēia inoa mai ka ʻoiaʻiʻo ua like ia me kahi waina ʻulaʻula liʻiliʻi i ninini ʻia ma ka ʻili. E noʻonoʻo, i kekahi manawa hiki i kēia wahi ke nui ma kekahi ʻaoʻao o ka maka. Hiki nō hoʻi ke loaʻa ma ka lima, ka wāwae, a i ʻole ma nā wahi ʻē aʻe o ke kino. Eia naʻe, ʻike pinepine ʻia ma ka maka, ka ʻāʻī, a me ke poʻo.

Pehea ka maʻamau o kēia kūlana i kapa ʻia ʻo "Port Wine Stain"?

ʻAʻole kēia he mea maʻamau loa. Ma ka awelika, ma kahi o 3 o 1,000 mau pēpē hānau hou e loaʻa paha kēia "Port Wine Stain". Hiki ke loaʻa i nā pēpē o nā lāhui āpau, me ka nānā ʻole i ke kāne. No laila, inā loaʻa i kāu pēpē kēia ʻano kiko, mai hopohopo a noʻonoʻo, "No ke aha ʻo kaʻu pēpē wale nō?" ʻAʻole ʻoe hoʻokahi.

Ke nalo wale aku nei kēia mau hōʻailona hānau?

He pilikia kēia i loaʻa i nā mākua he nui. E like me ka mea i ʻōlelo ʻia ma mua, he hōʻailona hānau mau ka "Port Wine Stain". ʻO ke ʻano kēia , ʻaʻole ia e nalowale ma kona iho me ka ʻole o ka lāʻau lapaʻau. ʻOiai e māmā iki paha kekahi mau hōʻailona hānau liʻiliʻi i ka hala ʻana o ka manawa, ʻaʻole pinepine ka "Port Wine Stain".

Ke ʻino aʻe nei kēia wahi i kou wā ʻelemakule?

ʻAe, i kekahi manawa hiki. I ka hala ʻana o ka manawa, nui nā kiko `(Port Wine Stain)` e lilo i ʻeleʻele a mānoanoa, e piʻi aʻe ana ma luna o ka ʻili. ʻOiai paha he pālahalaha a laumania lākou i ka wā mua, i ka hala ʻana o ka manawa hiki i ka ʻili ma kahi o ke kiko ke lilo i ʻiliʻili a puʻupuʻu. Eia kekahi, i kekahi manawa inā loaʻa kahi ʻeha liʻiliʻi ma kēlā mau wahi, hiki ke kahe ke koko ma mua o ka maʻamau a paʻakikī iki paha ke kāohi.

He aha ke kumu o ka loaʻa ʻana o kēia "Port Wine Stain" i kahi pēpē?

ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia. Eia nō naʻe, manaʻoʻiʻo nā kānaka ʻepekema ʻo ke kumu nui ka ulu ʻana o nā capillaries , nā kīʻaha koko liʻiliʻi ma lalo o ko kākou ʻili.Ua hoʻonui ʻia kēia mau capillaries, ʻo ia hoʻi, ua ʻoi aku ko lākou nui ma mua o ka maʻamau a me he mea lā ua kīkoʻo ʻia. ʻO ia ke kumu e loaʻa ai kēlā kala i ka ʻili.

Ke hoʻomau nei ka noiʻi ʻana i ke kumu e hana ai kēia mau capillaries i kēia ʻano ʻē. I kekahi manawa, hiki i kekahi mau lālā o ka ʻohana ke loaʻa i kēia ʻano. Eia naʻe, ʻaʻole hiki ke ʻōlelo mau ʻia he loulou genetic kona. I kekahi manawa, hiki ke hana me ka ʻole o kekahi kīnā genetic (genetic mutation).

Pehea ke ʻano o kēia hōʻailona hānau "Port Wine Stain"?

E like me kā mākou i kamaʻilio ai ma mua, ʻo ka "Port Wine Stain" he wahi poni, ʻulaʻula, a poni paha ma ka ʻili. He mau palena maopopo kona. ʻO ia hoʻi, hiki iā mākou ke ʻike maopopo i kahi e hoʻomaka ai a e pau ai ke wahi.

ʻOiai hiki ke ʻike ʻia kēia mau hōʻailona hānau ma nā wahi āpau o ke kino, ʻike pinepine ʻia lākou ma:

• Ma ka maka
• Ma ka ʻāʻī
• Poʻo (ma ke poʻo)

I nā keiki ʻōpio, he laumania kēia mau kiko `(Port Wine Stain)`. I ka ulu ʻana o ke keiki, ulu nui aʻe kēia hōʻailona hānau. Eia naʻe, ulu ia e like me ka nui o ke kino. E like me ka mea i ʻōlelo ʻia ma mua, i ka hala ʻana o ka manawa, hiki i kēia mau kiko ke lilo i ʻeleʻele a mānoanoa, e like me nā ʻiliʻili ma lalo o ka ʻili. Eia kekahi, ʻoi aku ka nui o ke kahe ʻana o ke koko i kēia mau wahi ʻoiai inā he ʻeha iki.

He mea ʻino anei nā ʻili waina Port?

ʻO ka hapa nui o ka manawa, ʻaʻole ia he mea ʻino i ke olakino nā kiko `(Port Wine Stain)`. ʻO ia hoʻi, ʻaʻole lākou e hoʻoulu i kekahi ʻeha a i ʻole nā ​​maʻi koʻikoʻi ʻē aʻe. Eia nō naʻe, no kekahi mau keiki, ʻoiai ke loaʻa kēia kiko ma ka maka, ʻoiai ke nui a ʻeleʻele ke kala, hiki ke lilo i kumu nui o ke kaumaha. ʻO ka noʻonoʻo ʻana i ko lākou helehelena hiki ke hoʻoulu i ka hilahila a me ka makaʻu, hiki ke alakaʻi i ka haʻahaʻa o ka manaʻo ponoʻī a me ka emi ʻana o ko lākou makemake e launa pū me nā poʻe ʻē aʻe.

ʻAʻole pinepine loa, hiki ke pili kēia mau kiko "Port Wine Stain" me nā maʻi lapaʻau paʻakikī e like me ka "Klippel-Trenaunay syndrome" a i ʻole ka "Sturge-Weber syndrome." ʻO ka poʻe i hānau ʻia me kēia mau maʻi, he mau ʻano ʻē ko lākou i loko o nā kīʻaha koko ma nā wahi ʻē aʻe o ko lākou kino. No laila, pono e nānā ʻia lākou e ke kauka e ʻike inā he mau pilikia koʻikoʻi.

Eia kekahi, inā e nui a ʻike nui ʻia kahi ʻili waina awa ma hope o ke ola, hiki ke lilo i hōʻailona o kahi pilikia olakino ʻē aʻe a i ʻole ke kumu o nā pilikia ʻē aʻe. No ka laʻana, inā ua ʻeha ke kiko, hiki ke kahe maʻalahi ke koko ma mua o ka ʻili maʻamau. Eia kekahi, ʻoi aku ka nui o ka pilikia o ka poʻe me nā ʻili waina awa a puni nā maka i ka loaʻa ʻana o kahi maʻi maka i kapa ʻia ʻo glaucoma.

Pehea ʻoe e ʻike ai inā he "Port Wine Stain" kou?

Hiki i ke kauka ke ʻike maʻamau inā he "Port Wine Stain" kahi pēpē ma ka nānā ʻana i ka ʻili o ka pēpē. ʻO ka hapa nui o ka manawa, ʻike ʻia kēia mau mea i ka wā hānau.E nīnau aku nō hoʻi ke kauka iā ʻoe e pili ana i kou mōʻaukala olakino ʻohana.

I ka manawa pinepine, he pilikia hoʻonaninani wale nō ka ʻili o ka ʻili waina awa. Eia nō naʻe, e hana ke kauka o kāu pēpē i nā hoʻokolohua e hoʻoholo ai inā he hōʻailona ia o kahi maʻi koʻikoʻi, e like me ka Sturge-Weber syndrome.

Inā he kānalua ko ke kauka, a makemake paha e kāpae i kekahi maʻi ʻē aʻe, hiki iā ia ke paipai i nā hoʻokolohua hou aʻe. Eia kekahi laʻana:

• Nā hoʻokolohua maka e ana i ke kaomi maka
• Nā hoʻokolohua kiʻi e like me nā X-ray, CT scans, a i ʻole MRI
• He hoʻāʻo e pili ana i ka lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻili (Skin biopsy)

He aha nā lāʻau lapaʻau no ka `(Port Wine Stain)`?

ʻAʻole pono ka mālama ʻana i nā ʻili waina awa i pili ʻole i kekahi pilikia olakino kikoʻī. Eia nō naʻe, koho kekahi poʻe e ʻimi i ka mālama ʻana. Aia kekahi mau kumu no kēia:

• ʻO ka pilikia o ke kahe koko nui a me ka maʻi pili i ka wā e loaʻa ai kahi ʻeha.
• Ma hope aku, e mānoanoa paha ka ʻili, puʻupuʻu, a lilo i mea ʻeleʻele.
• Hopena ma ka manaʻo ponoʻī a me nā pilina pilikanaka .

ʻO ka lāʻau lapaʻau maʻamau a kūpono hoʻi, ʻo ia ka laser therapy. Hana kēia ma ka hoʻēmi ʻana i nā kīʻaha koko i hoʻonui ʻia ma ke ʻano ʻē, e hōʻemi ana i ke kala o ka hōʻailona hānau. ʻOi aku ka maikaʻi o kēia lāʻau lapaʻau inā hoʻomaka ʻia i ka wā ʻōpiopio, i ka wā e liʻiliʻi ana nā kīʻaha koko.

He pōkole ka manawa o nā kau lapaʻau laser, he mau minuke wale nō ka lōʻihi. Pono ka nui o ka poʻe e hana hou i ka lapaʻau i kēlā me kēia mau mahina. Ma hope o ka lapaʻau laser, hiki i ka ʻili ke lilo i ʻulaʻula a manaʻo e like me ka mea i puhi ʻia i ka lā. Inā ʻoluʻolu ʻole ka lapaʻau, hiki iā ʻoe ke noi i kāu kauka e hāʻawi iā ʻoe i kahi pīpī hoʻomānoino a i ʻole ka kirīmi. I kekahi manawa hāʻawi ʻia nā keiki ʻōpio loa i ka anesthesia laulā, i hiki iā lākou ke hiamoe i ka wā o ka lapaʻau.

Hiki ke pale ʻia ke koʻikoʻi o ka Port Wine?

ʻOiai ʻaʻole ʻike nā kānaka ʻepekema i ke kumu pololei o nā "Port Wine Stains", ʻaʻohe ala e pale aku ai iā lākou. ʻAʻole i hana ʻia kēia mau māka hānau e kekahi mea e hana ʻia ana i ka wā hāpai. No laila, mai hopohopo, me ka noʻonoʻo ʻana, "No kekahi mea aʻu i hana ai?"

Inā loaʻa iaʻu ʻo `(Nevus Flammeus)`, he aha kaʻu e manaʻo ai?

ʻAʻole e nalowale nā ​​ʻila waina Port iā lākou iho. Inā ʻaʻole mālama ʻia, hiki iā lākou ke lilo i mea nui, ʻeleʻele, mānoanoa, a puʻupuʻu i ka hala ʻana o ka manawa.

No ka hapa nui o nā kānaka, he hoʻonaninani wale nō kēia mau māka hānau a ʻaʻole ia e hoʻoulu i nā pilikia olakino nui. Eia nō naʻe, inā he "Port Wine Stain" kou a i ʻole kāu keiki, he mea maikaʻi ke nānā ʻia e ke kauka i kēlā me kēia manawa.

ʻOiai hiki i ka mālama ʻana me ka laser ke hōʻemi i ke kala o kēia mau māka hānau, hiki ke ʻokoʻa nā hopena mai kēlā kanaka a kēia kanaka. ʻOiai ma hope o ka mālama kūleʻa ʻana, i kekahi manawa he mau makahiki ma hope mai, hiki ke ʻike hou ʻia kēia mau kiko `(Nevus Flammeus)` a i ʻole e lilo i ʻeleʻele.

Pehea e hiki ai iaʻu ke kōkua i kaʻu keiki e ola me kahi "Port Wine Stain"?

ʻO ka "Port Wine Stain", ʻoi aku hoʻi ma ka maka, hiki i ke keiki ke hilahila a hoʻohaʻahaʻa i kona manaʻo ponoʻī. Hiki i kekahi poʻe ke nānā aku iā ia me ke ʻano ʻē a ʻōlelo i nā mea ʻeha. E hoʻāʻo i kēia mau mea e kōkua i kāu keiki e kū i kēia kūlana:

• E kamaʻilio ākea me kāu keiki e pili ana i kēia hōʻailona hānau ma nā ʻōlelo maʻalahi.
• E hoʻomaopopo iā ia ʻo kēia "Port Wine Stain" he ʻāpana ia o kona kino, he mea kū hoʻokahi, kūikawā, a he ʻōniʻoniʻo hoʻi .
• Inā makemake kāu keiki, e kōkua iā lākou e hoʻohana i kahi ʻano mea hoʻonani uhi e hōʻemi ai i ka ʻike ʻia o kahi kiko.
• E kamaʻilio me nā poʻe a kāu keiki e launa pū ai (e like me nā kumu, nā hoaaloha) e pili ana i ka hōʻailona hānau. E hōʻoia i ka hāʻawi ʻana o ke kula i kahi ʻano kākoʻo kahi e hiki ai i kāu keiki ke aʻo a launa pū me nā poʻe ʻē aʻe me ka ʻole o ka hoʻoweliweli a hoʻokaʻawale ʻia paha .
• E hoʻomaʻamaʻa i ka pane ʻana i nā nīnau ke nīnau mai kekahi e pili ana i ia mea. Eia kekahi laʻana, e hoʻomaʻamaʻa i ka ʻōlelo ʻana i kahi mea maʻalahi e like me, "ʻO koʻu hōʻailona hānau kēia."
• E aʻo aku i kāu keiki e mālama i kēia hōʻailona hānau me he mea lā he hiʻohiʻona maʻamau o ko lākou kino , e like me ke kala o nā maka.

Pono anei ka mālama ʻili kūikawā no ka `(Port Wine Stain)`?

Hiki i ka ʻili ke maloʻo i kekahi manawa ma kahi i loaʻa ai kahi "Port Wine Stain". No laila, he mea nui e hoʻomaʻū maikaʻi i ka wahi.

Inā ua ʻeha ka ʻili (e.g., kahi ʻōpala, kahi ʻoki), hiki ke kahe ke koko ma mua o ka ʻili maʻamau. No laila, e hoʻomaʻemaʻe i ka wahi ma ka holoi pono ʻana me ke kopa a me ka wai. A laila, e kaomi i ka wahi me kahi kāʻei maʻemaʻe.

I ka manawa hea ʻoe e ʻimi ai i ke kōkua lapaʻau no kahi `(Nevus Flammeus)`?

Inā loaʻa iā ʻoe a i ʻole kāu keiki kekahi o kēia mau hōʻailona o ka "Port Wine Stain", e ʻike koke i ke kauka:

• Inā ʻoe e kahe ana ke koko, ʻoiai inā ʻaʻole hiki ke hoʻōki i ke kahe ʻana o ke koko.
• Inā ʻike ʻia he maʻi (e.g. ʻulaʻula, pehu, piha i ka pehu ).
• Inā he ʻeha.
• Inā ʻoe e kahakaha.
• Inā e kahe ana kekahi mea e like me ka wai.

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

ʻO `(Port Wine Stain)` a i ʻole `(Nevus Flammeus)` he hōʻailona hānau mau loa ia e ʻike pinepine ʻia ma ka maka. ʻIke ʻia ia he kiko pālahalaha, poni, ʻulaʻula a poni paha ma ka ʻili o kahi pēpē hānau hou, akā i ka hala ʻana o ka manawa hiki ke lilo i mea nui, mānoanoa, a ʻeleʻele. ʻOiai he mea ʻino ʻole ia, ʻaʻole hiki ke pili pinepine ʻia me nā maʻi ʻē aʻe. No laila, inā he hōʻailona hānau kou a kāu keiki paha e like me kēia, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka no ka ʻōlelo aʻo. Hiki i ka mālama ʻana me ka laser ke hōʻemi i ko lākou helehelena. He mea nui loa hoʻi ke kōkua i ke keiki e hoʻomanawanui i kēia kūlana me ka naʻau.