Pehea ka maʻamau o kēia ʻano i kapa ʻia ʻo 'Atypical Genitalia'?
He maʻi laha ʻole kēia. Wahi a nā helu helu, hoʻokahi wale nō i loko o 1,000 a 4,500 mau pēpē hānau hou i hoʻopilikia ʻia e kēia maʻi. No laila, ʻoiai he mea laha ʻole ia, he mea nui e makaʻala i kēia.Pehea e ulu maʻamau ai nā ʻōpū o ke pēpē?
I mea e maopopo ai i kēia, pono ʻoe e ʻike iki e pili ana i ke ʻano o ka ulu ʻana o nā ʻōpū moekolohe o kahi pēpē i loko o ka ʻōpū. E noʻonoʻo, he hana paʻakikī a kupaianaha kēia. Hana ʻia kēia ma ʻekolu mau ʻanuʻu nui: 1. Hoʻoholo ʻana i ka moekolohe genetic: ʻO ka mea mua e hana ʻia, ʻo ia ka hoʻoholo ʻana i ka moekolohe genetic o ka pēpē. Hana ʻia kēia i ka wā e hui pū ai ka sperm mai ka makuakāne me ka hua manu mai ka makuahine. Loaʻa mau i ka makuahine kahi chromosome X. Hiki i ka makuakāne ke loaʻa i kahi chromosome X a i ʻole Y. No laila, inā hui pū kahi X mai ka makuahine a me kahi X mai ka makuakāne (XX), hānau ʻia ke kaikamahine. Inā hui pū kahi X mai ka makuahine a me kahi Y mai ka makuakāne (XY), hānau ʻia ke keikikāne. 2. Hoʻokumu ʻia ʻo Gonad: ʻO ka mea aʻe, ulu nā gonads o ka pēpē e like me kēia moekolohe genetic. I loko o kahi pēpē wahine, ulu nā ovaries, a i loko o kahi pēpē kāne, ulu nā testes. 3. Ka ulu ʻana o nā genitalia kūloko a me waho: ʻO ka hope, ʻo nā hormones i hana ʻia e kēia mau gonads ke kuleana no ka ulu ʻana o nā genitalia kūloko a me nā genitalia waho o ka pēpē. No laila, inā he loli i kekahi ʻāpana o kēia kaʻina hana, a laila hiki ke loaʻa kahi kūlana i kapa ʻia ʻo Dissociative Developmental Disorder (DSD), a i ʻole 'Atypical Genitalia'. ʻO ka hapa pinepine, ʻo kēia ma muli o nā pilikia hormonal. Hiki ke hoʻoili ʻia kēia mau mana hormonal ma o nā genes mai nā mākua, a i ʻole hiki ke loaʻa me ke kumu ʻole.He aha nā kumu o ke ʻano "Atypical Genitalia"?
ʻO ka hapa nui o ka manawa, ʻo ke kumu nui o kēia he mau hewa hormonal e kū nei i loko o ke kino o ke pēpē i ka wā hāpai.Hoʻomalu kēia mau hormones i ka ulu ʻana o nā ʻōpū moekolohe o ka pēpē. No laila, inā he kaulike ʻole i loko o kēia mau hormones, e hoʻopilikia ia i ke ʻano o ka ulu ʻana o nā ʻōpū moekolohe o ka pēpē. Hiki ke ʻokoʻa kēia mau kumu ma muli o nā chromosomes moekolohe o ka pēpē.46 XX DSD (DSD me ke ʻano chromosome wahine)
Ma kēia kūlana, he wahine ke ʻano hoʻoilina o ka pēpē (XX). ʻO ia hoʻi, he mau ovaries a me kahi uterus ko ka pēpē i loko. Eia nō naʻe, hiki ke like ke ʻano o ka genitalia waho me ke kāne, me ka penis a me nā testicles. Hana ʻia kēia inā hōʻike ʻia nā genitalia waho o ka pēpē i ka piʻi ʻana o nā pae o nā hormones kāne (androgens) i ka wā o ka ulu ʻana o ka genitalia waho o ka pēpē. ʻO ke kumu maʻamau o kēia he kūlana i kapa ʻia ʻo 'Congenital Adrenal Hyperplasia' (CAH). ʻO kēia ka manawa e hana ai nā kelepa adrenal o ka pēpē i nā hormones kāne he nui loa.46 XY DSD (DSD me ke ʻano chromosome kāne)
I kēia hihia, ʻo ke ʻano hoʻoilina o ka pēpē he kāne (XY). ʻO ke ʻano kēia, pono e loaʻa i ka pēpē nā testicles (testes) i loko. Eia naʻe, ʻaʻole hōʻike maopopo nā ʻano kāne o waho, a hiki ke like me nā ʻano wahine. Aia kekahi mau kumu nui no kēia:- ʻAʻole e ulu pono ana nā hua manu o ke pēpē.
- ʻAʻole hiki i nā testicle ke hana i ka lawa o ka testosterone hormone kāne.
- ʻOiai ua hana ʻia ka testosterone, ʻaʻole hiki i ke kino o ke pēpē ke hoʻohana pono iā ia.
Nā maʻi o ka hoʻokaʻawale ʻana o Gonadal
ʻO ka mea e hana ʻia ma kēia hihia, ʻaʻole e ulu piha nā gonads o ke pēpē i loko o nā testes a i ʻole nā ovaries.- ʻO ka Dysgenesis Gonadal Hui Pū ʻia: Ma kēia, ʻaʻole i ulu piha ʻia nā gonads (testes a i ʻole ovaries ).
- ʻO ka Dysgenesis Gonadal hapa: Ma kēia, ʻoiai ua hana ʻia kekahi ʻiʻo testicular i loko o nā gonads o ke pēpē, ʻaʻole hana pono kēlā mau testicles.
- ʻO Gonadal Dysgenesis: Ma kēia, ua hānau mua ʻia nā gonads ʻelua, ʻo ia hoʻi, ʻaʻole lākou e ulu i loko o nā testicles a i ʻole nā ovaries.
ʻO ka DSD o nā hua moa (DSD o nā hua moa a me nā hua moa)
He kūlana kākaʻikahi loa kēia. I kēia hihia, loaʻa paha i nā gonads o ke pēpē nā ʻiʻo ovarian a me nā ʻiʻo testicular. A i ʻole, aia paha he ovary ma kekahi ʻaoʻao a me kahi testicle ma kekahi ʻaoʻao.He aha ke ʻano o ke kūlana 'Atypical Genitalia' ma waho?
ʻOkoʻa ke ʻano o kēia maʻi ma muli o nā chromosomes i hoʻopilikia ʻia a me ke kūlana hormonal. Hiki i nā ʻano genitalia atypical i loko o kahi pēpē wahine genetically (XX chromosomes) ke loaʻa nā hiʻohiʻona penei:- Hoʻonui ʻia ka clitoris a like ke ʻano me kahi penis liʻiliʻi.
- Aia ka puka o ka urethral ma lalo o ka scrotum a i loko paha o ka vagina ma kahi o kona wahi maʻamau.
- Ua pili pū nā labia, e like me ka scrotum.
- Aia paha he puʻu o ka ʻiʻo ma waena o nā labia, a he ʻano like paha ia me kahi ʻeke e loaʻa ana nā testicles.
- ʻAʻohe loa ka penis a he liʻiliʻi loa paha, me he penis i hoʻonui ʻia (micropenis).
- Aia ka puka urethral ma ke kumu o ka penis a i ʻole ma waena o ka scrotum ma kahi o ka wēlau (ua kapa ʻia kēia ʻano ʻo 'Hypospadias').
- Ua hoʻēmi ʻia ka scrotum, ua māhele ʻia i ʻelua, a ua like ke ʻano me ka labia.
- Ua iho nā testicles mai ka lua ʻōpū a ʻaʻole lākou i loko o ka scrotum ( nā testicles i iho ʻole ).
He aha nā hōʻailona ʻē aʻe o ke ʻano "Atypical Genitalia"?
ʻO ke ʻano o nā ʻāpana kino waho ke ʻano nui. Eia kekahi, e ʻike paha ʻoe i nā mea e like me:- Nā hemahema o ka hormonal .
- I ke ʻano o ke kaikamahine, hiki ke hoʻomaka koke ka menstruation , lohi, a ʻaʻole loa paha.
- ʻO Hypospadias ka wā ʻaʻole i loaʻa ka puka urethral ma ka piko o ka penis.
Pehea e ʻike ai nā kauka i kēia maʻi?
Hoʻomaopopo pinepine nā kauka i kēia maʻi i ka wā e hānau ai kahi pēpē . A i ʻole, i ka wā o ka hoʻokolokolo mua ʻana o ke keiki maikaʻi o ka pēpē. Inā ʻaʻole maopopo inā he keikikāne a he kaikamahine paha ke pēpē, e kauoha ke kauka o ka pēpē i kekahi mau hoʻokolohua hou aʻe.He aha kāu e manaʻo ai i ka wā o ka hoʻokolokolo olakino o kāu keiki?
E nīnau mua ke kauka iā ʻoe e pili ana i ka mōʻaukala olakino o kou ʻohana. A laila, e nānā pono ʻo ia i nā ʻāpana kino o waho o ke pēpē. Hiki ke hana ʻia nā hoʻokolohua aʻe e hana i kahi hōʻailona pololei:- Nā hoʻāʻo koko: No ka nānā ʻana i nā pae hormone a me nā chromosomes o ka pēpē.
- Nā hoʻāʻo kiʻi: Hiki i kēia ke nānā i nā ʻāpana o loko o ke pēpē, e like me ka ultrasound, X-ray, a i ʻole MRI (Magnetic Resonance Imaging) scan.
- Biopsy a i ʻole Laparoscopy: E lawe i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai nā gonads o ke pēpē no ka hoʻokolokolo ʻana.
Pehea e mālama ʻia ai ka 'Atypical Genitalia'?
Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, ʻo ka hana mua ka ʻike ʻana i ke kumu pololei o kēia ʻano. A laila, ma muli o nā hopena o nā hoʻāʻo hormone a me nā hoʻokolohua ʻē aʻe, e hoʻoholo ka hui lapaʻau i kahi hoʻolālā lapaʻau a me ka hāʻawi kūpono i ka wahine no ka pēpē. ʻOiai he mea paʻakikī loa kēia a he mea koʻikoʻi hoʻi, e loaʻa ana kahi hui multidisciplinary e kōkua iā ʻoe. He mea nui loa ka loaʻa ʻana o ka poʻe i loaʻa ka ʻike loea i kēia ʻano kūlana. ʻO lākou ka poʻe hiki ke hāʻawi iā ʻoe i ka ʻōlelo aʻoaʻo maikaʻi loa. Hiki i kēia hui ke komo pū me nā loea e like me:- Kauka hānau hou
- He kanaka loea i ka hoʻoilina
- Kauka lapaʻau endocrine
- Kauka lapaʻau
- Kauka Urology
- Kauka Noʻonoʻo
- Ke kumu o ke kūlana o ka pēpē.
- ʻO ke ʻano o nā ʻāpana kino o ke pēpē.
- Nā makemake a me nā manaʻoʻiʻo moʻomeheu o kou ʻohana.
- Lapaʻau Hoʻololi Hormone (HRT): Inā he kūlike ʻole o ka hormonal, hiki ke hoʻomalu ʻia kēia kūlana me ka lāʻau lapaʻau hormone wale nō.
- ʻO ke ʻoki hana hou: I kekahi manawa, e kūkākūkā paha ke kime lapaʻau me ʻoe a manaʻo i ke ʻoki ʻana i ka wā ʻōpiopio o kāu pēpē. Eia nō naʻe, aia nā manaʻo like ʻole e pili ana i kēia ʻoki hana hou no ka 'Atypical Genitalia'. I kekahi manawa, no ka laʻana, inā ʻaʻohe puka o ka pēpē no ka mimi e hele ai, pono ke ʻoki ʻana i ke kino. Eia nō naʻe, inā ʻo ke ʻoki ʻana ke kumu nui o ka hoʻomaikaʻi ʻana i ke ʻano, koho kekahi mau mākua e kali a hiki i ka wā e ʻelemakule ai ka pēpē a hiki ke hoʻoholo i ko lākou kino ponoʻī. He hoʻoholo koʻikoʻi loa kēia a noʻonoʻo pono ʻia.
E hoʻomanaʻo: Hiki i kēia hoʻoholo ʻoki kino ke loaʻa ka hopena nui i ke ola o kāu keiki i ka wā e hiki mai ana, no laila he manaʻo maikaʻi e kamaʻilio me kahi kākā'ōlelo i loaʻa ka ʻike loea i kēia kahua.
Inā loaʻa i kaʻu keiki ka 'Atypical Genitalia', he aha kaʻu e manaʻo ai?
He hopena koʻikoʻi ko ke ʻano 'Atypical Genitalia' i ke keiki ʻaʻole wale ma ke kino, akā, ma ka nohona a me ka noʻonoʻo pū kekahi.Hiki ke hana ʻia e ke ʻano o nā ʻōpū wahine, kahi mea e hoʻopilikia ai i ka manaʻo o ke keiki iā ia iho. ʻO ka hoʻoholo ʻana e hana i ke ʻoki kino hiki ke hoʻopilikia i ke ʻano o ke ola o ke keiki. ʻO ia ke kumu he mea nui e ʻimi i ka ʻōlelo aʻoaʻo loea e pili ana i kēia. ʻOiai hiki ke hoʻoluhi nui ʻia ka maʻi 'Atypical Genitalia', e kōkua kāu hui lapaʻau iā ʻoe e hoʻoholo i ke ala lapaʻau maikaʻi loa.Āhea wau e ʻimi ai i ke aʻo lapaʻau e pili ana i ke kūlana 'Atypical Genitalia' o kaʻu keiki?
ʻO ka maʻamau, ʻike ke kauka i kēia maʻi i ka wā hānau a i ʻole i ka wā o ka hoʻokolokolo mua ʻana o ka pēpē. A laila e kūkākūkā ke kauka i nā koho hōʻailona a me nā koho lapaʻau me ʻoe.He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka o kaʻu keiki?
I kahi manawa e like me kēia, nui paha nā nīnau ma kou manaʻo. E kōkua paha kēia mau nīnau iā ʻoe:- Pono anei kaʻu keiki i ka lāʻau lapaʻau koke, a i ʻole hiki iā mākou ke kali iki a hoʻoholo ma hope?
- ʻO wai nā kauka lapaʻau e pono ai i kaʻu keiki ke ʻike?
- E ʻike anei mākou i kahi kākā'ōlelo genetic?
- Pehea lā ka wā e hiki mai ana o kaʻu keiki?
- Aia kekahi mau hui kākoʻo no nā poʻe a me nā ʻohana me 'Atypical Genitalia'?
E hiki anei i kaʻu keiki ke hānau keiki i ka wā e hiki mai ana?
ʻO ka hānau keiki a me ka hana moekolohe i ka wā e hiki mai ana e hilinaʻi ʻia ma ke kumu o ke ʻano, ʻo ia hoʻi ʻo Atypical Genitalia. Ua ʻike kekahi mau noiʻi:- Hiki i nā kaikamahine me Congenital Adrenal Hyperplasia (CAH) ke hāpai ma hope o ka loaʻa ʻana o ka lāʻau hormone.
- ʻO nā keikikāne me hoʻokahi a ʻoi paha ka testicle e hana maʻamau ana, hiki paha iā lākou ke hānau keiki.
- ʻO ka poʻe me ka Ovotesticular DSD nona ka ovary e hana maʻamau ana hiki ke loaʻa nā keiki.
- ʻOiai inā he dysgenesis testicular, hiki i ka poʻe me ka ʻōpū i hoʻomohala maikaʻi ʻia ke hiki ke mālama i kahi embryo i hoʻokomo ʻia.
ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)
Ua maopopo iā mākou ʻo ka ʻike ʻana ua loaʻa i kāu pēpē hānau hou ka 'Atypical Genitalia' hiki ke lilo i mea hopohopo loa, hoʻonāukiuki a huikau hoʻi no ʻoe a me kou ʻohana. Pono ʻoe e kūkākūkā i nā pilikia lapaʻau, pono a me ka noʻonoʻo me kou ʻohana a me ka hui lapaʻau.Akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi i kēia huakaʻi. E hāʻawi kāu hui lapaʻau iā ʻoe i ka ʻike, ke kākoʻo, a me nā ʻōlelo aʻoaʻo āu e pono ai. Me kā lākou kōkua, hiki iā ʻoe ke hana i nā hoʻoholo maikaʻi loa e pili ana i ke kāne a me ka mālama ʻana o kāu pēpē, hāʻawi i kāu pēpē i ke ola maikaʻi loa, a hoʻokō i nā hopena maikaʻi loa. Mai nalowale ka wiwo ʻole. Me ka ʻike kūpono a me ke kākoʻo, e hoʻoikaika ʻia ʻoe e kū i kēia pilikia.
`ʻO nā ʻano genitalia atypical, nā ʻano genitalia ambiguous, DSD, nā ʻano genital, nā hormones, nā chromosomes, ke olakino o ke keiki, nā kūlana genetic, Congenital Adrenal Hyperplasia, ka ulu ʻana o ka moekolohe
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo