Hana ʻo Bev Axford-Hawx, 46, ma kahi haukapila a ʻōlelo ʻo ia ua paʻakikī mau kona mau lā koʻikoʻi, akā ʻaʻole ʻo ia i manaʻo nui.
"Ua hana au ma ka mokulele, ua neʻe mākou a puni," wahi āna. - Hoʻokahi manawa i kēlā me kēia ʻelua makahiki i loaʻa iaʻu kahi hoʻokolohua lapaʻau piha, akā lawe mau ʻia e nā kāne o ka makahiki. Ua ʻōwili wale lākou i ko lākou mau maka a ʻaʻole lākou i ʻike i ka hewa iaʻu. "
ʻO nā lā koʻikoʻi lōʻihi, ʻeha a paʻakikī o Bev, ua luhi kino a ua loaʻa ka hopena nui i kāna hana, ola pilikino a me ka hilinaʻi iā ia iho: "Ua hoʻomaha loa. I kēlā me kēia manawa aʻu e hoʻokipa ai a hele ai i kahi pāʻina a i kono ʻia i kahi male, pule wau ʻaʻole e kūlike ka lā me koʻu wā.
I ka huli hope ʻana o Bev i nā loea, ʻōlelo nā kauka e ʻoi aku ka maikaʻi o kona hānau ʻana i nā keiki. ʻOiaʻiʻo, i ka wā mua ua ʻoluʻolu ʻo ia, akā ua ʻoi aku ka ʻino ma mua o ka wā. Ua makaʻu ʻo Bev e kamaʻilio me nā kauka a manaʻo ʻo ia he ʻāpana koʻikoʻi o ka wahine.
Ke noiʻi nei ʻo Ob/gyn a me kāna hoa hana ʻo Bev Malcolm Dixon i kāna mau hōʻailona a manaʻoʻiʻo ʻo ia kekahi o nā kaukani wahine nona nā hōʻailona ʻeha e pili ana i ka maʻi hoʻoilina von Willebrand, kahi e hōʻemi ai i ka hiki o ke koko. ʻO ke kumu nui o ka maʻi ʻo ia ka nele o ka protein i loko o ke koko, e kōkua ana i ka mānoanoa, a i ʻole kāna hana maikaʻi ʻole. ʻAʻole kēia he hemophilia, akā he maʻi koko koʻikoʻi kahi e hana nui ai kekahi protein.
Wahi a Dixon, a hiki i ka 2% o ka poʻe o ka honua i loaʻa nā genetic mutations i kumu i ka maʻi von Willebrand, akā kakaikahi ka poʻe i ʻike iā lākou. A inā ʻaʻole hopohopo nā kāne i kēia ʻoiaʻiʻo ma kekahi ʻano, a laila e hōʻoluʻolu nā wahine i ka wā menstruation a me ka hānau ʻana. 'Ōlelo ke kauka ua hala pinepine ka manawa o ka mālamaʻana, no ka mea,ʻaʻole i manaʻo nā wāhine he mea pono ke nānā aku i ko lākou pilikia.
"Ke hiki ka wahine i ka wā ʻōpio, hele ʻo ia i ke kauka, nāna e kuhikuhi i nā lāʻau lapaʻau hānau, ʻaʻole maikaʻi loa i ka hoʻomalu ʻana i ke koko inā pili ia me von Willebrand," wahi a Dixon. - ʻAʻole kūpono nā pila, ua kuhikuhi ʻia nā mea ʻē aʻe i ka wahine, a pēlā aku. Hoʻāʻo lākou i nā lāʻau lapaʻau like ʻole e kōkua no ka manawa pōkole akā ʻaʻole e hoʻoponopono mau i ka pilikia.
ʻO nā lā koʻikoʻi ʻeha, "ka wai", ka pono e hoʻololi pinepine i nā huahana maʻemaʻe a hiki i ka pō, i kekahi manawa ka ihu a me nā ʻeha koʻikoʻi ma hope o nā pā liʻiliʻi, a ʻo ka hoʻōla lōʻihi ma hope o nā kaʻina niho a me ka peʻa ʻana nā hōʻailona nui i loaʻa i ke kanaka von Willebrand.
"ʻO ka pilikia ke nīnauʻia nā wāhine inā he maʻamau ko lākou manawa,'ōlelo lākou heʻae, no ka mea, ua loaʻa i nā wāhine a pau i loko o ko lākouʻohana nā manawaʻeha," wahi a Kauka Charles Percy, he kākā'ōlelo hematologist ma ka Halemai Queen Elizabeth ma Birmingham. "He nui nā kuʻikahi e pili ana i ka mea maʻamau, akā inā hoʻomau ke koko no nā lā ʻelima a ʻeono paha, kūpono ke noʻonoʻo iā von Willebrand."
Ma UK, ma kahi o 60 wahine i ka makahiki he hysterectomy (ka wehe ʻana i ka ʻōpū). Eia nō naʻe, hiki ke pale ʻia kēia ma ka lawe ʻana i nā hana pale ma mua.
"Inā mākou i ʻike hou aku i ka hope o von Willebrand, ua pale paha mākou i ka hysterectomy. Akā ʻaʻole mālama ʻia ma ke ʻano he maʻi maʻi, "wahi a Kauka Percy.
Ua hoʻoholo ʻo Bev Axford-Hawks e wehe i ka ʻōpū ma mua o kona ʻike e pili ana i ka hiki ke mālama ʻia no ka pilikia. ʻEhā lā ma hope o ka hana ʻana, ua ʻeha hou ʻo ia i ka ʻeha a hoʻomaka e kahe ke koko i loko. ʻO kekahi hana koʻikoʻi i koi ʻia e wehe i kahi ʻāpana koko nui ma ka ʻāpana pelvic. A laila noho ʻo ia i ʻelua lā i ka mālama koʻikoʻi.
Ma hope o kona ola ʻana, ua kamaʻilio ʻo Bev i kāna hoa hana ʻo Malcolm Dixon, ka mea i ʻae mai ua loaʻa iā ia nā hōʻailona āpau o ka maʻi von Willebrand.
Ua ʻōlelo ʻo Kauka Percy, ua pōmaikaʻi kekahi mau wahine i ka waika tranexamic mua, kahi e hoʻemi ai i ke koko, a hāʻawi ʻia kekahi i desmopressin, kahi e hoʻonui ai i ka pae koko i ka maʻi o von Willebrand.
Ua hoʻomaikaʻi maikaʻi ʻia ke ola o Bev mai kona hysterectomy. ʻOiai ua hiki ke pale ʻia kēlā mau hana koʻikoʻi, hauʻoli ʻo ia i hiki iā ia ke hana i kēia manawa a hoʻolālā i nā lā hoʻomaha me ka maluhia, me ka hopohopo ʻole i kona mau manawa. ʻO kāna kaikamahine wale nō ka hopohopo a Beth, ʻo ia ka mea i loaʻa i ka maʻi, akā ua paʻa ʻo Beth e hōʻoia i ke kaikamahine ʻaʻole e kū i kāna mea e hana ai.
Nā kumu ʻē aʻe o ka wā ʻeha
I kekahi mau hihia, ʻaʻole hiki ke ʻike ʻia ke kumu. Eia nō naʻe, aia kekahi mau maʻi olakino a me kekahi mau lāʻau lapaʻau e hiki ke hoʻoulu i ke koko menstrual kaumaha. Aia kēia mau mea:
- Nā ovaries polycystic
– ʻO nā maʻi ʻeha o nā ʻōpū pelvic
– Adenomyosis
- ʻAʻole hoʻoikaika i ka thyroid gland
- Nā polyps o ka pūpū a i ʻole ka endometrium
- ʻO nā mea hoʻopalekana intrauterine