Ke pehu pū nei nā wāwae o kāu pēpē? He maʻi ʻo Milroy paha kēia!

Ua ʻike anei ʻoe ua pehu wale nā ​​wāwae o kāu keiki liʻiliʻi, ʻoi aku hoʻi ma lalo o nā kuli? I kekahi manawa hiki ke ʻike ʻia kēia ma hope koke o ka hānau ʻana. A i ʻole hiki ke ʻike ʻia ma hope o kekahi mau lā. He mea maʻamau no nā mākua he nui ke hopohopo iki e pili ana i kēia. ʻO kekahi kumu o kēia ʻano pehu ma nā wāwae ua kapa ʻia ʻo ka maʻi ʻo Milroy. I kēia lā, e kamaʻilio mākou e pili ana i kēia me nā kikoʻī, me ka maʻalahi loa.

He aha ka maʻi o Milroy?

I ka ʻōlelo maʻalahi, ʻo ka maʻi ʻo Milroy kahi maʻi e pili ana i kahi hui o nā maʻi i kapa ʻia ʻo primary lymphedema . ʻO ke ʻano o "Primary" ʻaʻole ia i hoʻokumu ʻia e kekahi maʻi ʻē aʻe, kū ia ma kāna iho. He maʻi hānau mua ia, ʻo ia hoʻi, hiki ke loaʻa ke ʻano i ka wā hānau. He maʻi genetic ia, ʻo ia hoʻi, ua hoʻoilina ʻia.

He ʻōnaehana ko ko kākou kino i kapa ʻia ʻo ka ʻōnaehana lymphatic. Ua like kēia me kahi ʻōnaehana hoʻokahe wai e hoʻoneʻe ana i nā ʻōpala mai ko kākou kino. Ke hoʻomohala pono ʻole ʻia nā kahawai lymphatic a me nā lymph node i loko o kēia ʻōnaehana lymphatic, ʻaʻole hiki iā lākou ke hana pono. A laila, ʻaʻole kahe pono ka wai lymph a noho ma kahi hoʻokahi. Penei ka hōʻiliʻili ʻana o ka wai lymph a hoʻoulu i ka pehu ʻana i nā wāwae o nā pēpē, ʻoiai nā wāwae haʻahaʻa a me nā wāwae. E noʻonoʻo i kahi mea e like me ka wā e paʻa ai kahi paipu wai, piha ka wai ma kahi hoʻokahi.

Ua kapa ʻia hoʻi ka maʻi Milroy he lymphedema hereditary type I.

Hiki ke paʻakikī iki ka ʻike ʻana i kēia maʻi i kekahi manawa, no ka mea, ʻaʻole ʻike pinepine nā kauka i nā maʻi e like me kēia. Akā inā ʻike ʻoe i ka pehu ʻana i nā wāwae o kāu pēpē, he mea nui loa ia e nīnau i kāu kauka e pili ana i ia mea. No ka mea, ʻo ka wikiwiki o kou ʻike ʻana i ke ʻano, ʻo ka wikiwiki hoʻi e hiki ai iā ʻoe ke hoʻomaka i ka lāʻau. He mea nui hoʻi ʻaʻole e hopohopo.

Pehea ka laha ʻole o ka maʻi ʻo Milroy?

He ʻano maʻi laha ʻole kēia. Hoʻopilikia ia i hoʻokahi i loko o 6,000 mau pēpē i hānau ʻia. ʻOi aku ka maʻamau i nā kaikamahine ma mua o nā keikikāne. Ua ʻōlelo ʻia no kēlā me kēia keikikāne me kēia ʻano maʻi, aia ma ka liʻiliʻi he ʻelua kaikamahine.

He aha nā hōʻailona o ka maʻi ʻo Milroy?

Loaʻa paha i kāu pēpē kēia mau hōʻailona mai ka wā hānau mai. I kekahi manawa e ʻike ʻia paha ma hope iki. E nānā e ʻike inā loaʻa i kāu pēpē kēia mau hōʻailona:

• Pehu ʻana ma nā wāwae haʻahaʻa (edema): ʻIke pinepine ʻia kēia pehu ʻana ma lalo o nā kuli. I kekahi manawa hiki ke loaʻa ma hoʻokahi wale nō wāwae, akā ʻoi aku ka pinepine ma nā wāwae ʻelua.
• ʻO nā aʻa koko e pehu ana ma nā wāwae haʻahaʻa: I kekahi manawa, me ka pehu ʻana, ʻike maopopo ʻia nā aʻa koko.
• Ka pehu ʻana o nā testicles (hydrocele): Hiki i nā testicles o nā keikikāne ke pehu a piha i ka wai. Hiki i kēia ke hopohopo iki no nā mākua, akā hiki nō hoʻi ke lilo i hōʻailona o kahi maʻi.
• Nā kui wāwae i kūlou i luna:Hiki ke loli ke ʻano o nā kui a me he mea lā ua hoʻohuli ʻia i luna.
• Nā puʻupuʻu ʻili liʻiliʻi (papillomatosis): ʻAʻole kēia he mau maʻi kanesa, akā hiki ke ʻike ʻia he mau puʻupuʻu liʻiliʻi ma ka ʻili, i kekahi manawa e like me ka pua liʻiliʻi.
• Nā pilikia ʻōpū: Hiki i kekahi mau pēpē ke ʻeha i ka ʻōpū, ka luaʻi ʻana, a me ka maʻi pākī. ʻAʻole hiki kēia i nā kānaka a pau, akā hiki ke hana ʻia.

He aha nā kumu o ka maʻi ʻo Milroy?

ʻO ke kumu nui o ka maʻi ʻo Milroy he mutation (variant) i loko o kahi gene i kapa ʻia ʻo FLT4 . Ua like nā genes me kahi hoʻonohonoho liʻiliʻi o nā kuhikuhi e kāohi ana i nā mea āpau i loko o ko mākou kino. Kōkua kēia gene FLT4 i ka ʻōnaehana lymphatic e hana pono. No laila, i ka wā e loaʻa ai kahi loli liʻiliʻi i loko o kēia gene, ʻo ia hoʻi, he mutation, ʻaʻole hana pono ka ʻōnaehana lymphatic.

I ka hapanui o nā hihia, loaʻa i kekahi o nā mākua o nā keiki me ka maʻi Milroy ka maʻi. Hoʻoilina ʻia ia ma ke ʻano autosomal dominant . ʻO ia hoʻi, hiki i kahi keiki ke loaʻa ka maʻi ʻoiai inā hoʻokahi wale nō makua i loaʻa ka gene no ka maʻi. No ka laʻana, inā loaʻa i nā mākua ʻelua ka mutation gene, loaʻa i kēlā me kēia keiki he 50% ka manawa e hoʻoilina ai i ka maʻi. ʻOiai ma waena o nā hoahānau ma ka ʻohana hoʻokahi, hiki ke ʻokoʻa ke koʻikoʻi o nā hōʻailona, ​​a i ʻole ka makahiki e ʻike ʻia ai nā hōʻailona. Hiki i kekahi keiki ke loaʻa ka nui o ka pehu, ʻoiai ʻaʻole paha i koʻikoʻi kekahi.

ʻEiwa o loko o 10 mau keiki me ka hoʻololi ʻana o ka gene FLT4 e hōʻike i nā hōʻailona o ka pehu ʻana o ka wāwae i ka piha ʻana o 3 mau makahiki .

Pehea e ʻike ʻia ai kēia maʻi?

Hoʻomaopopo ʻia ka maʻi ʻo Milroy me ka hoʻokolokolo kino e ke kauka . E nānā pono ke kauka i nā wāwae o ke pēpē no nā hōʻailona o ka pehu ʻana, nā loli o ka ʻili, a me ke ʻano o nā kui. Eia kekahi, hiki ke hana ʻia nā hoʻokolohua aʻe:

• Ultrasound: He scan kēia o ka ʻōpū o ka makuahine i ka wā hāpai e hiki ke hōʻike i kekahi manawa inā he pehu i nā wāwae o ka pēpē. Hiki ke hana ʻia ma nā wāwae ma hope o ka hānau ʻana o ka pēpē.
• Lymphoscintigraphy: He hoʻāʻo kūikawā iki kēia. Ma kēia hoʻāʻo, ua hoʻokomo ʻia kahi liʻiliʻi o ka mea radioactive ma lalo o ka ʻili a hoʻohana ʻia kahi kāmela e nānā i kona neʻe ʻana ma o ka ʻōnaehana lymphatic. Hiki i kēia ke hōʻike i ke ʻano o ka hana ʻana o ka ʻōnaehana lymphatic a inā he mea e ālai ʻia ai.
• Ka hoʻāʻo ʻana i ka genetics: Kōkua kēia i ka hōʻoia inā he mutation i loko o ka gene FLT4. ʻO ka maʻamau, pili kēia i ka lawe ʻana i kahi hāpana koko.

Hiki i ke kauka o kāu keiki ke kuhikuhi iā ʻoe i kahi mea lapaʻau lymphedema i hōʻoia ʻia e nā pediatric, ka mea i loea i ka mālama ʻana i kēia mau kūlana.

Pehea e mālama ʻia ai ka maʻi ʻo Milroy?

Aia nā lāʻau lapaʻau ma ka home no ka pehu ʻana i hoʻokumu ʻia e kēia maʻi. Ua manaʻo ʻia kēia mau lāʻau lapaʻau e kāohi i ka pehu ʻana, hōʻemi i nā pilikia, a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki. ʻO nā lāʻau lapaʻau no ka maʻi Milroy no nā wāwae pehu e komo pū me:

• Lapaʻau hoʻopili: Ke hoʻohana nei i nā kāʻei hoʻopili kūikawā a i ʻole nā ​​​​bandage. Hoʻopili kēia i ke kaomi mālie i nā wāwae e hōʻemi i ka pehu a kōkua i ke kahe ʻana o ka wai lymph i loko o ke kino.
• Lipine Kinesiology (KT tape): He lipine hoʻopili kūikawā kēia i hoʻohana ʻia e nā mea pāʻani. Hiki iā ia ke kōkua i kekahi manawa i ka hōʻemi ʻana i ka pehu ma ka hoʻoulu ʻana i ka ho'ōla.
• Nā kāmaʻa e kākoʻo ana: He mea nui e komo i nā kāmaʻa e kūpono, e kākoʻo ana, a ʻaʻole paʻa.

I ka hapanui o nā hihia, e hāʻawi kēia mau lāʻau lapaʻau maʻalahi iā ʻoe i nā hopena maikaʻi. Inā ʻaʻole lākou e holo pono, hiki iā ʻoe ke hoʻāʻo i ka lomilomi hoʻokahe lymphatic . He ʻano lomilomi mālie kēia i hana ʻia e kahi mea lapaʻau i aʻo kūikawā ʻia. Kōkua ia i ka wehe ʻana i ka wai lymph mai nā wahi i paʻa a ʻae iā ia e kahe pono. Hiki i ke kauka ke hana i kēia, a i ʻole hiki ke aʻo ʻia ʻoe pehea e hana ai ma ka home.

Inā ʻaʻole holo pono kēia mau ʻano hana, hiki i kāu kauka ke ʻōlelo aku i ke ʻoki kino e kōkua i ka hana maikaʻi ʻana o ka ʻōnaehana lymphatic o kāu keiki. Eia nō naʻe, manaʻo pinepine ʻia kēia he koho hope loa. Hiki i kēia ke komo pū me:

• Ke wehe ʻana i nā ʻiʻo i hoʻopilikia ʻia.
• Ke hoʻohana nei i ke kaʻina hana bypass e hoʻohuli i ke kahe o ka wai lymph i nā wahi ʻoi aku ka maikaʻi: Ua like ia me ka hana ʻana i ala hou a puni ke alanui i ālai ʻia.
• Ke hoʻoili ʻana i nā lymph node olakino mai kahi ʻē aʻe o ke kino o ke keiki i loko o nā wāwae. Ua kapa ʻia kēia he vascularized lymph node transfer .

Inā loaʻa kēia maʻi i kaʻu keiki, he aha kaʻu e manaʻo ai?

No ka mea, he maʻi laha ʻole ka maʻi ʻo Milroy, pono paha ʻoe e wehewehe i nā kumu a kāu keiki a i ʻole nā ​​poʻe ʻē aʻe i ke ola o kāu keiki. No ka laʻana, inā loaʻa i kāu keiki kahi puʻupuʻu ma ko lākou wāwae ma ke kula, he ʻoi aku paha ka koʻikoʻi ma mua o kekahi keiki ʻē aʻe, a ʻoi aku ka nui o ka maʻi. ʻO ke kamaʻilio ʻana e pili ana i kēia hiki ke kōkua i ke kumu e hoʻomaopopo i ke kumu e lōʻihi ai ka hoʻololi ʻana o kāu keiki i nā lole ma ka papa hoʻoikaika kino, a i ʻole ke kumu he mea weliweli ke noho ʻole me nā kāmaʻa (ma muli o ka pilikia o ka ʻeha a me ka maʻi). Akā , mai hopohopo, hiki i kāu keiki ke hana i ka hapa nui o nā mea a nā keiki ʻē aʻe o kāna papa e hana ai.

He maʻi mau ka maʻi o Milroy, ʻo ia hoʻi he kūlana lōʻihi ia. Hiki ke piʻi mālie ka pehu ʻana o nā wāwae i kekahi poʻe, a emi iki i kekahi. Inā ʻaʻole mālama ʻia, hiki i kēia pehu ke hoʻolilo i ka ʻāpana i hoʻopilikia ʻia e paʻakikī a paʻakikī e like me ka pōhaku. Eia kekahi, hiki i ka poʻe me kēia kūlana ke loaʻa i kahi maʻi ʻili i kapa ʻia ʻo cellulitis . He kūlana kēia e lilo ai ka ʻili i ʻulaʻula, wela, a ʻeha. He kūlana weliweli kēia e hiki ke laha i ke koko. No laila, he mea nui e haʻi i ke kauka ʻoiai inā ʻike ʻoe i kahi loli liʻiliʻi i kou ʻili.

Pehea lā wau e mālama ai i kaʻu keiki?

Eia kekahi mau mea hiki iā ʻoe ke hana e mālama i kāu keiki me ka maʻi ʻo Milroy:

• E mālama pono i ka ʻili o kāu keiki. E hoʻomaʻemaʻe i ka ʻili ma nā wāwae i kēlā me kēia lā, e hoʻomaloʻo maikaʻi iā lākou, a e kau i kahi moisturizer. E mālama i nā ʻoki liʻiliʻi, nā ʻōpala, nā nahu pepeke, a i ʻole nā ​​maʻi i ka hikiwawe loa. Hiki i kēia ke kōkua i ka hōʻemi ʻana i ka pilikia o ka loaʻa ʻana o nā maʻi e like me ka cellulitis.
• E ho'āʻo e pale i ka hōʻeha ʻana i kou mau wāwae. E ʻaʻahu i nā lole e uhi ana i kou mau wāwae i ka wā e pāʻani ana, e holo ana, a e lele ana paha. Mai hoʻokuʻu iā lākou e hele i waho me ka ʻole o nā kāmaʻa. ʻOi aku ka maʻalahi o nā keiki me ka maʻi Milroy i nā maʻi ma mua o nā poʻe ʻē aʻe.
• Mai hoʻokuʻu i nā wāwae o kāu keiki e noho ma kahi hoʻokahi, e hoʻoneʻe pinepine iā lākou. Hiki i nā hoʻoikaika kino māmā a me ka hāpai ʻana a me ka hoʻohaʻahaʻa ʻana i nā wāwae ke kōkua i ka hōʻemi ʻana i ka pehu.
• E paipai i ka hana kino, ʻoiai ka ʻauʻau ʻana. Kōkua ke kaomi o ka wai i ka pehu ʻana. Eia kekahi, he maikaʻi nā hoʻomaʻamaʻa mālie ma nā hono, e like me ka hele wāwae a me ke kaʻa paikikala.
• E nīnau i kāu kauka ma mua o ka hāʻawi ʻana i kāu keiki i kekahi lāʻau lapaʻau. Hiki i kekahi mau lāʻau lapaʻau, no ka laʻana, kekahi mau lāʻau ʻeha, ke hoʻonui i ka pehu.
• E hōʻemi i ka nui o ka paʻakai i kāu meaʻai. Hoʻonui ka paʻakai i ka paʻa ʻana o ka wai i loko o ke kino, hiki ke hoʻonui i ka pehu.
• E hānai i kāu keiki i ka meaʻai momona. ʻO ka ʻai kaulike o nā mea kanu, nā huaʻai, a me ka protein momona e kōkua i ka hōʻoia ʻana e loaʻa i kāu keiki nā meaola e pono ai.

Āhea e pono ai i kaʻu keiki ke ʻike i ke kauka?

E nānā mau ʻia ke keiki me ka maʻi ʻo Milroy. ʻAe kēia i ke kauka e ʻike i ke ʻano o ke keiki, pehea ka pehu ʻana, inā e hana ana ka lāʻau lapaʻau, a inā e mau ana ke ʻano like a i ʻole e ʻoi aku ka ʻino. Inā manaʻo ʻoe ʻaʻole kōkua ka lāʻau lapaʻau, inā e piʻi ana ka pehu ʻana o ka wāwae o kāu keiki, inā he ʻulaʻula, inā he wela, a inā he kuni kāu keiki, e kamaʻilio me ke kauka o kāu keiki. I kekahi manawa pono paha kāu keiki e ʻike i kahi mea lapaʻau hana e kōkua iā lākou e hoʻohana maʻalahi i ko lākou lālā a hana i nā hana o kēlā me kēia lā.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka o kaʻu keiki?

Eia kekahi mau nīnau hiki iā ʻoe ke nīnau aku i ke kauka o kāu keiki:

• "Aia kekahi o ko mākou ʻohana i ka pilikia o ka loaʻa ʻana o kēia maʻi? Pono anei mākou e kiʻi i ka ʻōlelo aʻoaʻo genetic?"
• "Ua ʻike anei ʻoe i nā hui kākoʻo no ka poʻe me ka maʻi ʻo Milroy? Aia kekahi mau hui e like me ia ma Sri Lanka?"
• "Pehea e koho ai au i nā lole hoʻopaʻa kūpono no kaʻu keiki? Ma hea e loaʻa ai iaʻu?"
• "Ma kou ʻike, pehea ka holomua o kēia mau lāʻau lapaʻau maʻalahi? I ka manawa hea mākou e noʻonoʻo ai i ke ʻoki kino?"
• "He aha nā mea kūikawā āu e pono ai e hana e pale i ka ʻili ma nā wāwae o kāu keiki?"

ʻAʻole like ka loaʻa ʻana o kahi keiki me ka maʻi ʻo Milroy me ka loaʻa ʻana o kahi keiki me kahi maʻi maʻamau. ʻO ka hana mua i ka mālama ʻana i kāu keiki, ʻo ia ke aʻo iā ʻoe iho a me nā poʻe ʻē aʻe e pili ana i kēia maʻi. E aʻo i nā mea āpau e hiki ai iā ʻoe e pili ana i ia mea, a mai makaʻu e nīnau i nā nīnau a ka hui lapaʻau o kāu keiki. ʻAʻole ʻoe hoʻokahi, a he nui ka poʻe e hiki ke kōkua.

Nā mea nui a mākou e hoʻomanaʻo ai (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i nā kumu koʻikoʻi mai nā mea a mākou i kamaʻilio ai:

• ʻO ka maʻi ʻo Milroy kahi maʻi i hiki ke loaʻa i ka wā hānau a ua hoʻokumu ʻia e nā kumu genetic e hoʻopilikia ai i ka hana o ka ʻōnaehana lymphatic, e hopena ana i ka pehu ʻana o nā wāwae.
• He mea kākaʻikahi kēia, akā he mea nui e ʻimi i ke kōkua lapaʻau inā pehu nā wāwae o kāu pēpē. He mea nui loa ka ʻike koke ʻana a me ka mālama ʻana.
• ʻO nā koho lapaʻau e komo pū me nā kāʻei hoʻopaʻa, nā lipine kūikawā, ka lomilomi hoʻokahe lymphatic, a i kekahi manawa ke ʻoki ʻana.
• ʻOiai he maʻi mau loa kēia, he mea nui e mālama pono i ke keiki, mālama i ka ʻili, pale iā ia mai nā maʻi, a mālama iā ia ma lalo o ka mākaʻikaʻi lapaʻau kūpono.
• Mai hopohopo. Ma ka ʻike pono ʻana i kēia kūlana a me ka hana pū ʻana me kāu mau kauka, hiki i kāu keiki ke hele i kahi lōʻihi e ola ai i kahi ola maʻamau.

Inā he mau nīnau hou aku kāu e pili ana i kēia, e ʻoluʻolu e kamaʻilio me kāu kauka ʻohana a pediatrician paha.

ʻO ka maʻi ʻo Milroy, ʻōnaehana Lymphatic, ka pehu ʻana o nā wāwae i nā keiki, Lymphedema, nā maʻi hānau ʻia, nā maʻi genetic, ka lāʻau lapaʻau