Ke pilikia nei ʻoe me kou ʻili, lauoho, a i ʻole nā ​​niho? E kamaʻilio kākou e pili ana i ka Ectodermal Dysplasia!

Ua ʻike anei ʻoe he liʻiliʻi loa ka lauoho o kekahi mau keiki ʻōpio, a i ʻole e puka mai ana ko lākou mau niho i nā ʻano ʻē, a i ʻole ʻaʻole lākou e hou iki? Ke ʻike mākou i nā mea e like me kēia, loaʻa iā mākou kahi nīnau liʻiliʻi, "No ke aha e hana nei kēia?" I kekahi manawa ʻo ke kumu o kēia he ʻano maʻi genetic kakaʻikahi i kapa ʻia ʻo Ectodermal Dysplasia , a mākou e kamaʻilio nei i kēia lā. Mai hopohopo, e kamaʻilio mākou e pili ana i kēia me nā kikoʻī.

No laila, he aha ka Ectodermal Dysplasia?

I ka ʻōlelo maʻalahi, he maʻi hoʻoilina laha ʻole kēia. He kūlana ia e kū mai ana ma muli o nā loli i loko o ko kākou mau genes. Hoʻopilikia nui ia i kou lauoho, niho, kui, a me nā ʻōpū hou . I kekahi manawa hiki ke hoʻopilikia i kou mau maka, pepeiao, umauma, a i ʻole ka ʻōnaehana nerve waena. Hoʻokumu ʻia kēia mau ʻāpana a pau o ko kākou kino mai ka papa waho loa o nā cell i kapa ʻia ʻo ka ectoderm i ka wā e ulu ana kākou i loko o ka ʻōpū ma ke ʻano he fetus. No laila, kū mai kēia kūlana i ka wā e pilikia ai ka ulu ʻana o kēia ectoderm.

He maʻi hānau ʻia kēia, ʻo ia hoʻi, ua hānau ʻia ke kanaka me ia. Eia naʻe, ʻaʻole e ʻike koke nā kānaka a pau ma hope o ka hānau ʻana. I kekahi manawa, ʻike nā mākua i nā hōʻailona i loko o kekahi mau lā o ka hānau ʻana o kahi pēpē. I kekahi manawa, ʻaʻole paha e ʻike ʻia nā hōʻailona no nā makahiki.

Aia kekahi mau ʻano like ʻole o kēia ʻano maʻi?

ʻAe, ua ʻike maoli nā kānaka noiʻi ma mua o 180 mau ʻano o ka Ectodermal Dysplasia . Loaʻa i kēlā me kēia ʻano kona mau hōʻailona ponoʻī. E noʻonoʻo e like me nā lālā o ka ʻohana hoʻokahi he ʻokoʻa kekahi i kekahi. ʻAʻole ʻokoʻa kēia mau ʻano. E nānā kākou i kekahi mau laʻana, ʻeā?

• ʻO ka Hypohidrotic Ectodermal Dysplasia (HED): ʻO kēia ke ʻano maʻamau. He emi nā kelepa hou o kēia poʻe. No laila, ʻaʻole lākou e hou nui e like me nā poʻe ʻē aʻe. Hiki iā lākou ke ʻike i ka nalowale o ka lauoho, nā niho liʻiliʻi a nalowale paha, a me nā maʻi ʻili lōʻihi e like me ka eczema .
• ʻO ka Dysplasia Ectodermal Anhidrotic me ka Immune Deficiency (EDA-ID): Hōʻike ʻia kēia ʻano e nā pilikia koʻikoʻi o ka ʻōnaehana pale. No ka laʻana, ua emi nā antibodies a pinepine nā maʻi maʻi mau.
• ʻO ka maʻi Hay-Wells: Hiki i kēia poʻe ke ʻike i nā hōʻailona e like me ka hāʻule ʻana o ka lauoho, nā maʻi poʻo, nā kui palupalu, ka nalowale o nā niho, nā lihilihi e like me ka paʻa pū ʻana, a me ka lehelehe māwae a/a i ʻole ka palate .
• ʻO Hidrotic Ectodermal Dysplasia (HED2) a i ʻole Clouston syndrome: Hoʻopilikia nui kēia i ka ulu ʻana o ka lauoho, ka ʻili, a me nā kui.
• ʻO ka maʻi Witkop: Ma kēia kūlana, he palupalu nā kui a haki maʻalahi. Hiki ke nalowale nā ​​​​niho.(hypodontia) Hiki ke ʻano kone nā niho a ua mamao loa aku.

I kēia manawa ua maopopo iā ʻoe ʻaʻole kēia he maʻi hoʻokahi, akā he hui pū ʻana o nā pilikia like ʻole.

He aha nā hōʻailona o ka dysplasia ectodermal?

E like me kā mākou i ʻōlelo ai ma mua, loaʻa i kēlā me kēia ʻano o ka Ectodermal Dysplasia kona mau hōʻailona kūikawā. Eia nō naʻe, ma ke ʻano laulā, e ʻike kekahi kanaka me kēia maʻi i hoʻokahi o kēia mau hopena a i ʻole nā ​​​​​​mea ʻē aʻe:

• Nā maka: Nā maka maloʻo, ka ʻūmiʻi ʻana o nā maka, nā pilikia me ka ʻaoʻao mua o ka maka, no ka laʻana , ka ʻino hou ʻana o ka cornea .
• Ka nui o ka ulu ʻana: ʻOi aku ka lohi o ka nui o ka ulu ʻana o nā keiki me kēia maʻi ma mua o ka mea i manaʻo ʻia no ko lākou mau makahiki.
• Lauoho: Ka lahilahi o ka lauoho, ka haki maʻalahi, a i ʻole ka lohi o ka ulu ʻana. I kekahi manawa he kakaikahi loa ka lauoho.
• Nā lālā: Nā loli i ke ʻano o nā manamana lima a i ʻole nā ​​manamana wāwae, nalowale paha kekahi mau manamana lima, a i ʻole ua pili pū nā manamana lima i kekahi i kekahi (nā manamana lima a i ʻole nā ​​manamana wāwae i pili) .
• Waha: Lehelehe māwae a/a i ʻole ka lehelehe , nā pilikia niho. No ka laʻana, nā niho kekee, nā niho nalowale, a i ʻole nā ​​niho ʻano ʻē. I kekahi manawa hiki i nā niho ke lilo i ʻano wedge.
• Nā Kui: Nā mea e like me ka nalowale o nā kui lima a i ʻole nā ​​​​kui wāwae, ka mānoanoa, ka lahilahi, a i ʻole ke kaha ʻana o nā kui.
• ʻIli: Lilo ka ʻili i mea maʻalahi i ka ʻili e ʻānai a maloʻo.
• Nā ʻōpū hou: He emi ko lākou mau ʻōpū hou, no laila ʻaʻole lākou hou ma mua o nā poʻe ʻē aʻe. Ua kapa ʻia kēia ʻo Hypohidrotic Ectodermal Dysplasia (HED) . E like me kou ʻike, ʻo ka hou ka mea e hoʻomaʻalili ai i ko mākou kino ke wela lākou. No laila, ke emi ko mākou hou ʻana, a ʻaʻole paha e hou iki, hiki i ko mākou kino ke wela koke.
• ʻŌnaehana hānau a me ka mimi: ʻO ka hiki ʻole ke hoʻokahe loa i ka ʻōpū mimi e hoʻonui i ka pilikia o nā maʻi e hoʻopilikia ana i nā ʻōpū a i ʻole ka ʻōnaehana mimi, e like me ka hydronephrosis , micropenis , a i ʻole nā ​​​​testicles i iho ʻole . Hiki nō hoʻi ke hānau ʻia me ka ʻole o hoʻokahi a ʻelua paha mau puʻupaʻa.

ʻO ka mea nui, ʻaʻole i loaʻa i nā kānaka a pau me kēia mau hōʻailona ka Ectodermal Dysplasia . Inā manaʻo ʻoe he loaʻa iā ʻoe kēia mau hōʻailona, ​​hiki i kāu kauka ke hōʻoia iā ia me ka hoʻāʻo ʻana i ka genetic .

No ke aha i kū ai kēia kūlana? He aha nā kumu?

ʻO ke kumu nui o ka ectodermal dysplasiaNā ʻokoʻa o nā gene. ʻO ke ʻano kēia, aia nā loli i nā gene e mālama i ka ʻike i loko o ko mākou kino. ʻO ke ʻano o ka ectodermal dysplasia āu e hoʻomohala ai, pili ia i nā gene i loaʻa kēia mau loli, a me kēlā mau loli.

Hoʻoili pinepine ʻia kēia maʻi mai kēlā hanauna a i kēia hanauna . ʻO ke ʻano kēia, inā loaʻa i kekahi o ka ʻohana, aia kahi manawa e loaʻa pū ai i nā hanauna e hiki mai ana. Eia naʻe, he mea kākaʻikahi loa, hiki ke ulu aʻe ma ke ʻano he hoʻololi genetic hou, ʻoiai inā ʻaʻohe mea o ka ʻohana i loaʻa i ke ʻano ma mua.

Pehea ʻoe e ʻike ai i kēia?

Ke haʻi aku ʻoe i ke kauka ua loaʻa iā ʻoe a i ʻole kāu keiki kēia mau hōʻailona, ​​e hana mua ʻo ia i kahi hoʻokolokolo kino . Ma ke ʻano kūikawā, e ʻimi ʻo ia i nā mea ʻē i kou lauoho, nā kui, nā niho, a me nā ʻōpū hou.

Ma muli o kāu mau hōʻailona, ​​​​hiki iā ʻoe ke loaʻa nā hoʻokolohua kiʻi e like me X-ray a i ʻole CT scans .

Inā kānalua kāu kauka i ka Ectodermal Dysplasia , e kauoha paha ʻo ia i ka hoʻāʻo genetic . Hiki i kēia mau hoʻokolohua ke ʻike i nā loli i kāu mau genes. Hiki iā lākou ke haʻi pololei iā ʻoe inā he Ectodermal Dysplasia kou a, inā pēlā, he aha ke ʻano.

He aha nā lāʻau lapaʻau?

ʻO ke ʻano o ka lāʻau no kēia ma muli o ke ʻano o ka Ectodermal Dysplasia āu e loaʻa ai a me ke koʻikoʻi o kou mau hōʻailona. ʻAʻohe lāʻau lapaʻau no kēia ʻano. Eia nō naʻe, aia nā lāʻau lapaʻau e hiki ke kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona a ola i kahi ola maʻamau.

Hoʻoponopono nui kēia mau lāʻau i nā hōʻailona e kū mai ana:

• Ke hoʻomaʻalili nei i kou kino: Inā ʻaʻole ʻoe e hou nui, ʻoi aku ka paʻakikī o ka hoʻomaʻalili ʻana i kou kino. No laila, no ka pale ʻana i ka hahau wela a me ka luhi wela , e inu i ka wai nui . Hiki nō hoʻi iā ʻoe ke hoʻohana i nā ʻaʻahu hoʻomaʻalili .
• ʻO ke ʻoki niho a me ka waha: Hiki ke hoʻohana ʻia nā implants niho , nā alahaka, a i ʻole nā ​​​​dentures e pani i nā niho nalowale. Hiki ke hoʻohana ʻia nā hoʻopaʻa niho , nā veneers, a i ʻole nā ​​​​lei aliʻi e hoʻoponopono i nā niho liʻiliʻi a ʻano ʻole.
• Lapaʻau no ka nalowale o ka lauoho: Aia nā lāʻau lapaʻau e like me Minoxidil (Rogaine®) e hoʻoulu i ka ulu ʻana o ka lauoho.
• Moisturizer no ka ʻili: He mea nui loa ka hoʻohana mau ʻana i nā poni, nā kirīmi, a me nā lotion e hōʻemi i ka maloʻo o ka ʻili a me ka ʻili ʻana .

ʻO ka Dysplasia EctodermalMa muli o ka hoʻopilikia ʻana i nā ʻāpana like ʻole o ke kino, hiki i kāu hui lapaʻau ke hoʻokomo pū i nā ʻano loea like ʻole, e like me nā kauka niho, nā dermatologist, a me nā geneticists.

Pono nā pēpē i hānau ʻia me nā ʻano ʻē koʻikoʻi e hoʻomaka i ka mālama kūikawā i ka hikiwawe loa. E haʻi aku kāu kauka iā ʻoe i ka mea e manaʻo ai ma muli o kou kūlana.

Pehea ke ʻano o ke ola ʻana me kēia maʻi? (Outlook)

Inā ʻike mua ʻia kēia maʻi a mālama pono ʻia, hiki pinepine ke ola i kahi ola maikaʻi . ʻO ka hapa nui o ka poʻe me Ectodermal Dysplasia ke ola nei i kahi ola maʻamau.

E like me kā mākou i ʻōlelo ai ma mua, ʻaʻole hiki ke ho'ōla piha ʻia kēia. Akā me ka mālama ʻana, hiki ke hoʻomalu maikaʻi ʻia nā hōʻailona . No laila, ʻaʻohe mea e makaʻu ai.

Nā mea e pono ai ʻoe e ʻike inā loaʻa kēia maʻi i kāu keiki

Ma muli o nā hōʻailona a me ke kūlana o kāu keiki, pono paha lākou i kekahi mau ʻano lapaʻau like ʻole. ʻO ke kaʻina a me ka manawa o kēia mau lapaʻau e pili ana i ke ʻano o ka Ectodermal Dysplasia i loaʻa i kāu keiki a me ke koʻikoʻi o kā lākou mau hōʻailona. E hana pū kāu kauka me ʻoe e hoʻomohala i kahi hoʻolālā lapaʻau i kūpono loa no kāu keiki.

I ka manawa e like me kēia, he mea maʻamau iā ʻoukou ma ke ʻano he mau mākua ke loaʻa nā nīnau he nui. E kūkākūkā i kēia mau mea a pau me ke kauka a hoʻoponopono iā lākou.

Hiki ke pale ʻia kēia?

ʻO ka mea pōʻino, ʻaʻole hiki ke pale ʻia kēia kūlana. Hoʻokumu ʻia ia e nā loli genetic i hiki ʻole iā mākou ke kaohi. Inā loaʻa iā ʻoe a i ʻole kāu keiki ka Ectodermal Dysplasia , ʻaʻole ia ma muli o kekahi mea āu i hana ai a i ʻole i hana ʻole ai. Mai hopohopo no ia mea.

Inā loaʻa iā ʻoe kēia maʻi a ke hoʻolālā nei e hoʻomaka i kahi ʻohana, e noʻonoʻo e kiʻi i ke aʻoaʻo genetic . Hiki i kahi kākāʻōlelo genetic ke kōkua iā ʻoe e hoʻomaopopo i kou manawa e loaʻa ai kahi keiki me kahi maʻi genetic.

Āhea ʻoe e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe a i kāu keiki paha kekahi mau hōʻailona āu e manaʻo nei e pili ana i ka Ectodermal Dysplasia , e kamaʻilio me kāu kauka. Eia kekahi laʻana:

• Pala niho a nalowale paha ka niho
• Nā manamana lima me ka ʻupena
• Ka maloʻo pinepine a i ʻole ka ʻulaʻula ma ka ʻili
• Nā mea ʻē aʻe i nā maka a i ʻole nā ​​pepeiao

Inā ʻike ʻoe i nā mea e like me kēia, e hele koke aku i ke kauka.

He aha nā nīnau āu e nīnau ai i kāu kauka?

Inā ua ʻike ʻia ʻoe a i ʻole kāu keiki me ka Ectodermal Dysplasia , makemake paha ʻoe e nīnau i kāu kauka e like me:

• He aha ke ʻano o ka ectodermal dysplasia i loaʻa iaʻu/i kaʻu keiki?
• He aha nā koho lapaʻau e loaʻa iaʻu?
• Pehea e pili ai kēia kūlana i ke ola o kaʻu/kaʻu keiki?
• He aha nā pilikia e pono iaʻu e makaʻala ai?
• ʻEhia pinepine e pono ai iaʻu ke ʻike i ke kauka?
• Aia kekahi mau hui kākoʻo e kōkua ana i nā kānaka me kēia mau kūlana?

Hiki ke paʻakikī iki ka ʻike ʻana ua loaʻa iā ʻoe a i ʻole kāu keiki ka Ectodermal Dysplasia . E nui nā hoʻokolohua a me nā kauka e ʻike ai. Akā i ka wā e loaʻa ai iā ʻoe kahi hōʻailona , ​​e kōkua ʻia ʻoe e hoʻomaopopo pehea e pili ai kāu mau hōʻailona, ​​​​pehea e hoʻokele ai iā lākou, a me nā mea e manaʻo ai i ka wā e hiki mai ana.

Mai hopohopo, me ka mālama kūpono, hiki iā ʻoe ke hoʻokele i ka ectodermal dysplasia . Pono paha kekahi manawa a me ke ahonui e ʻike ai i ka mea kūpono loa iā ʻoe. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. ʻO ke kamaʻilio ʻana me nā poʻe ʻē aʻe e hele ana i ka mea like hiki ke lilo i kumu ikaika nui. E nīnau i kāu kauka e pili ana i nā hui kākoʻo a me nā kumuwaiwai.

Leka Lawe-Home

ʻAe, e nānā hou kākou i nā mea nui a mākou i kūkākūkā ai i kēia lā e pili ana i ka Ectodermal Dysplasia .

• He maʻi hoʻoilina laha ʻole kēia.
• Hoʻopilikia nui ia i ka lauoho, nā niho, nā kui, a me nā ʻōpū hou .
• Aia ma mua o 180 mau ʻano, no laila ʻokoʻa nā hōʻailona .
• ʻO ka hoʻāʻo genetic wale nō ke ala e hōʻoia pololei ai.
• ʻOiai ʻaʻohe lāʻau lapaʻau piha, aia nā lāʻau lapaʻau e kaohi ai i nā hōʻailona .
• Inā ʻike koke ʻia a mālama pono ʻia, hiki i nā poʻe he nui ke ola maʻamau .
• ʻAʻole ʻoe hoʻokahi, hiki iā ʻoe ke loaʻa ke kōkua mai nā hui kākoʻo .

No laila, inā loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai kēia mau hōʻailona, ​​​​mai makaʻu e ʻike i ke kauka a loaʻa ka ʻōlelo aʻoaʻo. ʻO ka ʻike ka hana mua.

ʻO ka dysplasia Ectodermal, nā maʻi genetic, nā maʻi ʻili, nā pilikia niho, nā pilikia lauoho, nā ʻōpū hou, ke olakino o nā keiki