He ʻokoʻa anei ka ulu ʻana o kāu keiki i ka moekolohe? (Nā Maʻi Hoʻomohala Moekolohe - DSDs) E kamaʻilio kākou e pili ana i kēia!

I kekahi manawa ke nānā ʻoe i kahi pēpē hānau hou, a i ka wā e ulu ana ke keiki, e ʻike paha ʻoe i kekahi mau loli i ko lākou kino e hopohopo iki ai ʻoe a hopohopo paha. ʻOi loa aku inā he mea maopopo ʻole e pili ana i nā ʻōpū, he mea maʻamau ke noʻonoʻo, 'He aha ka mea e hana nei?' I ia mau manawa, hoʻokahi mea e makaʻala ai, ʻo ia kēia mau pilikia ulu moekolohe, a i ʻole e like me kā mākou e kapa nei iā lākou , Nā Maʻi o ka Hoʻomohala Moekolohe (DSDs) .

He aha kēia mau maʻi o ka ulu ʻana o ka moekolohe (DSDs)?

I ka ʻōlelo maʻalahi, ʻo nā DSD kahi huaʻōlelo laulā no nā ʻano maʻi like ʻole e pili ana i nā loli i nā ʻano moekolohe o ke kanaka, ʻo ia hoʻi, ko lākou mau chromosomes , gonads (ʻo ia hoʻi nā ovaries a i ʻole testicles) , a i ʻole nā ​​genitals . Hiki ke ʻike ʻia kēia mau loli i ka wā hānau, i kekahi manawa ʻike ʻia i ka wā ʻōpio, a ma hope paha, me kekahi mau hōʻailona e ʻike ʻia i ka wā makua.

E noʻonoʻo i kekahi mau laʻana:

• ʻOiai inā hānau ʻia kahi pēpē me nā chromosomes o ke kāne (XY) , hiki i kona ʻōpū o waho (vulva) ke like me ka wahine.
• ʻOkoʻa, ʻoiai inā hānau ʻia kahi keiki wahine me nā chromosomes (XX) , hiki i ke kino wahine waho ke like me ka penis kāne a i ʻole ka clitoris i hoʻonui ʻia.
• Loaʻa paha i kekahi poʻe nā ʻiʻo ovarian a me testicular i loko o ko lākou kino, hiki iā ia ke hoʻohālike i ko lākou mau ʻōpū me he kāne, wahine, a i ʻole he hui pū ʻana o nā mea ʻelua.
• I kekahi manawa, ʻoiai he maʻamau nā ʻāpana kino, hiki i kahi mea ʻē i ke ʻano o ka chromosome ke hoʻopilikia i ka ulu ʻana a me ka ulu ʻana e kū mai ana i ka wā ʻōpio.

I ka wā ma mua, ua kapa ʻia kēia mau kūlana he 'intersex' . ʻO ia hoʻi, ʻo ka poʻe me nā chromosomes, genitals, a i ʻole nā ​​​​ʻōnaehana hānau keiki i kūpono ʻole i ka mahele kāne kuʻuna o ka wahine/kāne.

ʻO ka mea nui, ʻo ka loaʻa ʻana o kahi maʻi (DSD) ʻaʻole ia he manaʻo he "hewa" kekahi mea iā ʻoe. ʻO ia hoʻi, ua ulu iki ʻoe ma mua o nā poʻe ʻē aʻe. Ke ʻike pono ʻia a mālama ʻia, ola ka hapa nui o ka poʻe me (DSD) i nā ola maʻamau.

Makemake kekahi poʻe e hoʻohana i ka huaʻōlelo "differentiation" ma kahi o "disorder" i ka wā e pili ana iā DSD. Hōʻike kēia he ʻano ʻē kēia o ka ulu ʻana ma mua o kahi maʻi.

He aha nā ʻano nui o nā DSD?

Aia ma kahi o 60 mau kūlana like ʻole ma lalo o kēia huaʻōlelo umbrella (Nā Maʻi o ka Hoʻomohala ʻAna i ka Moekolohe). ʻO kekahi o nā mea maʻamau:

• ʻO ka maʻi hoʻokaʻulua Androgen (AIS)
• ʻO ka hyperplasia adrenal hānau(Congenital Adrenal Hyperplasia - CAH)
• Kallman Syndrome
• ʻO ka maʻi Klinefelter
• ʻO ka maʻi ʻo McCune-Albright
• ʻO ka maʻi Prader-Willi (PWS)
• ʻO ka maʻi Swyer
• ʻO ka maʻi Turner

Hoʻokumu kēlā me kēia o kēia mau hōʻailona i nā ʻano like ʻole, no laila he mea nui e kamaʻilio me ke kauka e ʻike pono i ke ʻano o ke kūlana.

He aha nā hōʻailona o nā DSD?

Hiki i ke kanaka me nā DSD ke ʻike i nā ʻano hōʻailona like ʻole. ʻO kekahi o kēia mau mea:

• ʻAʻohe o nā ʻāpana kino i ka wā hānau. ʻO nā hiʻohiʻona e like me (Aphallia) - ʻo ia hoʻi ka hānau ʻia me ka ʻole o ka penis, a me (Vaginal agenesis) - ʻo ia hoʻi ʻaʻole i hoʻomohala piha ʻia ka vagina.
• Nā ʻāpana moekolohe i ʻike ʻole ʻia mai nā mea o ke kāne a wahine paha. Eia kekahi laʻana, kahi penis i ulu ʻole a i ʻole kahi clitoris i hoʻonui ʻia.
• Kekahi mau kūlana o nā kelepa adrenal.
• Nā hemahema o ka hormonal.
• Nā hoʻololi ʻole o ke kaulike electrolyte i loko o ke kino.
• Hoʻomaka ka maʻi ʻōpū i kahi makahiki ʻē a i ʻole ʻaʻole hoʻi e hoʻomaka.
• Nā testicles i iho ʻole.
• ʻO Hypospadias - ʻO kēia ka manawa e waiho ai ka urethra, ka puka e puka ai ka mimi mai ka penis, ma kahi ʻokoʻa ma mua o ka wēlau.

Inā ʻike ʻoe i hoʻokahi a ʻoi aku paha o kēia mau hōʻailona i kāu keiki, ʻoi aku ka maikaʻi o ka ʻimi koke ʻana i ke kōkua lapaʻau.

He aha nā kumu o nā maʻi ulu ʻana o ka moekolohe?

Aia kekahi mau kumu e hānau ʻia ai kekahi me ka DSD. I kekahi manawa hiki ke hana ʻia e nā kumu he nui. Eia kekahi o nā kumu nui:

• Nā hoʻololi hoʻoilina: He mau loli kēia i loko o nā genes. ʻO kekahi he mau hoʻololi hoʻoilina . ʻO kekahi he mau hoʻololi kūlohelohe, e kū mai ana me ke kumu ʻole.
• Nā pilikia ulu i ka wā o ka ulu ʻana o ka fetal: Hiki ke loaʻa kēia mau kūlana inā ʻaʻole ulu pono kekahi mau ʻōkana i ka wā e ulu ana ka pēpē i loko o ka ʻōpū.
• ʻAʻole lawa ka hormone: Hana ʻia kēia ke hana ʻole ke kino o ka pēpē i nā hormones lawa, a i ʻole ke pane pono ʻole ke kino i nā hormones āna e hana ai. Hiki nō hoʻi ke hana ʻia ke hoʻopilikia ʻia ka hana ʻana o ka hormone no nā kumu ʻē aʻe, e like me ka emi ʻana o ke kahe koko i nā testicles a i ʻole nā ​​ovaries.
• Ka ʻike ʻana i kekahi mau hormones a i ʻole nā ​​​​lāʻau lapaʻau i ka wā hāpai:Eia kekahi laʻana, hiki i nā lāʻau lapaʻau e like me nā mea pale testosterone ke hana i kēia.

He paʻakikī loa kēia mau kumu, ʻo ia ke kumu e noiʻi hohonu nei nā kauka i kēia.

He aha nā pilikia e hiki ke loaʻa mai nā DSD?

ʻAʻole nā ​​kānaka a pau me DSD e loaʻa i nā pilikia olakino. Eia nō naʻe, ʻoi aku ka nui o ka pilikia o kekahi poʻe i ka loaʻa ʻana o kekahi mau maʻi. Eia kekahi mau laʻana:

• Nā maʻi Autoimmune - ʻO kēia nā maʻi kahi e hoʻouka ai ka ʻōnaehana pale i nā hunaola ponoʻī o ke kino.
• Maʻi puʻuwai hānau - maʻi puʻuwai i loaʻa i ka wā hānau.
• Ke koko kiʻekiʻe (Hypertension) a i ʻole ke koko haʻahaʻa (Hypotension).
• Ka hānau ʻole ʻana.
• Nā maʻi puʻupaʻa.
• ʻO ka maʻi metabolic.
• Osteoporosis - ʻO ke ʻano kēia e nāwaliwali nā iwi a haki maʻalahi.
• ʻO ka maʻi diabetes ʻano 2.

Akā e hoʻomanaʻo, he mau 'pilikia' wale nō kēia e hiki ke hana. ʻAʻole loaʻa i nā kānaka a pau. Hiki ke kāohi ʻia kēia mau pilikia ma o ka mālama pono ʻana i nā kauka.

Pehea e ʻike ʻia ai nā DSD? (Diagnosis)

I kekahi manawa, hiki i nā kauka ke ʻike i nā DSD i ka wā hānau. Eia nō naʻe, aia kekahi mau ʻano DSD nona nā hōʻailona e ʻike nui ʻia i ka wā e hiki ai i ke keiki ke ʻōpio a i ʻole ma hope o ke ola.

E hana mua ke kauka i kahi hoʻokolokolo kino. Ma hope o kēlā, hiki iā lākou ke hana i nā hoʻokolohua hou aʻe e hoʻomālamalama hou aku i ke kūlana, e like me:

• Hoʻāʻo ultrasound Pelvic a i ʻole MRI (Magnetic Resonance Imaging) .
• ʻO kahi hoʻāʻo karyotype kahi hoʻāʻo e nānā ai i nā ʻano ʻē o ka chromosome.
• Nā hoʻokolohua genetic e ʻike ai i nā hoʻololi gene .
• Hoʻohana ʻia nā hoʻokolohua hormone e ana i nā pae o ka hormone i loko o ke kino.

Ma muli o ka ʻike i loaʻa mai kēia mau hoʻokolohua e hiki ai i ke kauka ke hōʻoia i kahi hōʻailona kikoʻī.

Pehea e mālama ʻia ai nā DSD?

Ma muli o ke koʻikoʻi o nā hōʻailona, ​​​​pono paha i kekahi me DSD ka mālama ʻana e like me:

• Lapaʻau hoʻololi hormone: Hana ʻia kēia e hoʻoulu ai i ka wā ʻōpio a hōʻemi i ka pilikia o ka hoʻomohala ʻana i nā pilikia olakino e pili ana i ka DSD, e like me ka osteoporosis .
• ʻO ke ʻoki hana hou: Hana ʻia kēia ʻoki e hoʻololi i ke ʻano o nā ʻōpū. Eia naʻe,Inā ʻaʻole pono ke kauka, hoʻopanee pinepine nā kauka i nā kaʻina hana hiki ʻole ke hoʻihoʻi ʻia e like me kēia a hiki i ka wā e lawa ai nā keiki e hana i kā lākou mau hoʻoholo ponoʻī. He mea nui loa kēia.

No kekahi poʻe, he akahai loa nā hōʻailona o ka DSD a ʻaʻole pono paha kekahi lāʻau lapaʻau.

ʻO wai ka mea e mālama i nā maʻi o ka ulu ʻana o ka moekolohe?

Inā loaʻa i kāu keiki kahi maʻi i kapa ʻia ʻo DSD, pono lākou e mālama ʻia e kahi hui kauka multidisciplinary. Hiki i kēia hui ke komo pū me:

• Nā kauka keiki.
• Nā kauka lapaʻau ʻōpio.
• Nā endocrinologists pediatric - ʻo ia hoʻi, nā loea hormone.
• Nā kauka urologists keiki.
• Nā kauka wahine keiki.
• Nā kānaka ʻepekema i ka hoʻoilina.
• Nā loea noʻonoʻo keiki.

Me ke kākoʻo o kēia poʻe a pau i hāʻawi ʻia ai ke keiki i ka mālama maikaʻi loa.

He aha ka wā e hiki mai ana no ka poʻe me DSD?

ʻOi aku ka nui o ka pilikia o ka poʻe me (DSDs) i ka loaʻa ʻana o kekahi mau maʻi olakino. Eia nō naʻe, me ka ʻike pono ʻana a me ka mālama ʻana, hiki iā lākou ke ola lōʻihi a maʻamau, e like me ka poʻe me ka ʻole o (DSDs). No laila, mai nalowale ka manaʻolana.

He maʻi DSD ko kaʻu keiki. Pehea e hiki ai iaʻu ke mālama iā ia?

ʻAʻole he manawa maʻalahi ka wā ʻōpio no kekahi. No nā keiki me nā DSD, ʻo kēia paha ka manawa mua e ʻike ai lākou he ʻokoʻa ko lākou kino mai ko ko lākou mau hoa. Hiki ke lilo i mea paʻakikī loa no lākou.

ʻO ka mea maikaʻi loa hiki iā ʻoe ke hana no kāu keiki, ʻo ia ke aloha a kākoʻo iā ia me ke kūlana ʻole. Eia kekahi mau mea hiki iā ʻoe ke hana e paipai iā ia:

• E kamaʻilio ākea e pili ana i kona kūlana (DSD), e like me kāu e kamaʻilio ai e pili ana i nā maʻi ʻē aʻe. Mai hūnā nui iā ia.
• E haʻi mua iā ia i ka mea e hana ʻia a me ka mea e manaʻo ʻia i kēlā me kēia manawa o ke kauka.
• E paipai iā ia e komo i nā leʻaleʻa a me nā hana āna e makemake ai.
• E ʻimi i kahi kākā'ōlelo kūpono e kōkua i kāu keiki e hoʻoponopono i nā manaʻo paʻakikī a lākou e ʻike nei.

E hoʻomanaʻo, ʻo kou aloha, kou hoʻomaopopo ʻana, a me ke kākoʻo ka ikaika nui loa a kāu keiki e hele ai ma kēia huakaʻi.

Hiki ke pale ʻia nā DSD?

ʻAʻole, ʻaʻole hiki ke pale ʻia nā DSD. ʻAʻohe ala e ʻike mua ai inā he pilikia e hoʻoulu ai i kahi DSD. Eia kekahi, ʻaʻole hiki iā ʻoe ke kāohi i nā ʻano maʻi genetic e hoʻoilina ai kāu keiki. He mea kēia e hana ʻia i kekahi manawa.Mai manaʻo hewa no ia mea.

Āhea wau e ʻike ai i ke kauka o kaʻu keiki?

ʻO ka hapa pinepine, ʻike nā kauka i nā DSD i ka wā hānau. Akā i kekahi manawa, ʻike ʻia nā hōʻailona i ka wā ʻōpio a i ʻole ka wā makua. Inā manaʻo ʻoe he mea ʻē aʻe kekahi mea e pili ana i kāu keiki, e hoʻonohonoho i kahi manawa e ʻike ai i ke kauka. Hiki i ke kauka ke hana i kahi hoʻokolokolo kino a, inā pono, e kauoha i nā hoʻokolohua ʻē aʻe e ʻike i ke kumu o nā hōʻailona o kāu keiki.

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

Inā ua hānau ʻia kāu keiki me kahi maʻi (DSD), makemake paha ʻoe e nīnau i ke kauka i nā nīnau e like me kēia:

• "Pehea lā ke kūlana o kaʻu keiki?"
• "Ma hea e hiki ai iaʻu ke ʻike hou aku e pili ana i kēia kūlana?"
• "He aha ke ʻano o ka lāʻau lapaʻau e pono ai iā ia?"
• "Aia kekahi mau hui kākoʻo e kōkua ana i nā keiki a me nā mākua e like me kēia?"

He mea maʻamau ka loaʻa ʻana o ka hui pū ʻana o nā manaʻo ke loaʻa iā ʻoe kahi hōʻailona o (DSD). Ma kekahi ʻaoʻao, hiki iā ʻoe ke manaʻo ua hōʻoluʻolu ʻia kāu mau hōʻailona (a i ʻole kāu keiki) i kahi inoa. Akā he mea maʻamau nō hoʻi ke manaʻo huikau a kānalua, me ka noʻonoʻo ʻana, "He aha kaʻu e hana ai i kēia manawa?" ʻO kāu kauka ke kanaka maikaʻi loa e kamaʻilio pū me ʻoe e pili ana i kou mau manaʻo. Hiki iā lākou ke haʻi iā ʻoe e pili ana i nā kumuwaiwai a inā pono ʻoe i ka lāʻau lapaʻau.

ʻO ka mea hope loa, leka lawe i ka home

He kumuhana paʻakikī nā maʻi o ka ulu ʻana o ka moekolohe (DSDs), akā he mea nui e hoʻomanaʻo i kēia mau mea:

• ʻAʻole he 'hewa' ʻo (DSD), he 'ʻokoʻa' ia. Pono nā keiki a me nā mākua e noho nei me kēia maʻi i ke aloha, ka hoʻomaopopo ʻana, a me ke kākoʻo.
• He mea nui loa ka ʻike mua ʻana a me ke aʻo lapaʻau kūpono. Hiki i kēia ke pale i nā pilikia he nui a hoʻokele pono iā lākou.
• I ka wā e hana ai i nā hoʻoholo hiki ʻole ke hoʻohuli ʻia e like me ke ʻoki ʻana, he mea nui e hoʻomanawanui a hiki i ka wā e lawa ai ke keiki e hoʻomaopopo ai (ke ʻole he mea pono ia no ke olakino).
• ʻAʻole ʻoe hoʻokahi. Aia nā kauka, nā kākāʻōlelo, a me nā hui kākoʻo e hiki ke kōkua i nā poʻe me kēia mau kūlana.
• Me ka hoʻokele kūpono a me ke kākoʻo, nui ka poʻe me (DSDs) e ola hauʻoli, holomua, a maʻamau.

Manaʻolana wau he mea kōkua kēia ʻike iā ʻoe. Inā makemake ʻoe a i ʻole kekahi āu i ʻike ai e aʻo hou e pili ana i kēia maʻi, mai kānalua e kamaʻilio me ke kauka.

Nā maʻi o ka ulu ʻana o ka moekolohe, nā DSD, nā ʻōpū, nā chromosomes, nā hormones, nā hoʻololi genetic, ke olakino o ke keiki