Te Dysplasia Fibrous: Akohia tēnei mate ngoikore wheua onge

Kua whakaaro koe ki tētahi mamae wheua e pā ana ki a koe? Kāore tātou e tino whakaaro ki te kaha o ō tātou wheua. Engari whakaarohia, ka memeha haere tētahi wheua kaha i roto i tō tinana mai i roto, ā, kua kī tonu i tētahi mea e rite ana ki te miro, he kiko whara. Koinei te momo mate e kōrerohia ana e tātou i tēnei rā, arā, ko te Fibrous Dysplasia. He mate onge tēnei. Kaua e manukanuka, ka kōrerohia e tātou ngā mea katoa i roto i te huarahi māmā me te mārama.

He aha te Fibrous Dysplasia?

Ko te Fibrous Dysplasia te wā e whakakapia ai ō tātou kiko wheua hauora, kaha ki tētahi kiko muka (rite ki te kiri whara) rerekē. Arā, ki te wāhi e tika ana kia noho he wheua tūturu, ka whakakapia he kiko ngoikore, he kiko aho. He aha te mea ka tupu? Nā te mea kāore te kiko hou i te kaha rite ki te wheua tūturu, ka tino ngoikore te wheua. Nā tēnei ka ngāwari ake te whati (pakaru) .

Ahakoa ka taea e tēnei āhuatanga te puta i roto i tētahi wheua o te tinana, ka kitea nuitia i ngā wāhi e whai ake nei:

• Femur
• Iwi waewae (tibia)
• Ngā rara
• Ngā wheua angaanga me te kanohi
• Te wheua o te ringa o runga (humerus)

Engari koinei te mea nui hei maumahara. Ko te Fibrous Dysplasia he mate kore-matepukupuku (pai). Ko te tikanga, kāore e horapa mai i tētahi wheua ki tētahi atu. He tino whakamarie tēnā, kāore?

E rua ngā momo matua o te dysplasia fibrous:

Ka whakarōpūhia tēnei mate e ngā tākuta i runga i te maha o ngā wheua o te tinana e pāngia ana. Nō reira, e rua ngā momo matua.

He aha ngā tohu o tēnei mate? Me pēhea te mōhio ki tēnei?

Ko tētahi o ngā mea whakamiharo mō te Fibrous Dysplasia ko te mea ka pāngia ētahi tāngata me te kore he tohu . Whakaarohia kei te tangohia he hihi-X mō tētahi atu mea, ā, ka kitea noa iho.

Engari ki te puta mai ngā tohu, ka penei pea:

• Mamae wheua: Koinei te tohu matua. He mamae puhoi, he mamae tonu e puta mai ana i te wāhi kotahi. I ētahi wā ka kino haere tēnei mamae i te wā e hikoi ana, e hiki ana rānei i ngā taumaha.
• Ngā whatiwhatinga: E ai ki te kōrero i mua ake nei, nā te ngoikore o ngā wheua, ka whati ngāwari ngā wheua i ētahi wā, ahakoa he hinganga iti noa iho, he whiunga kaha rānei.
• Ka huri te āhua o te wheua: I te tipu haere o te kiko rerekē, ka pupuhi pea te wheua. Ka piko paku te waewae i tēnei, ka rerekē paku rānei te āhua o te mata i te wheua o te mata.
• Tērā pea ka pupuhi ngā rara, kāore he mamae .
• Mena ka pāngia te tuaiwi, ka puta pea he piko o te tuaiwi (scoliosis) .
• Ki te pāngia ngā wheua o te angaanga, ka puta pea ngā mea pēnei i te pupuhi o ngā kanohi, te whakarerekētanga o te tūranga o ngā wheua kauae, te nekeneke o ngā niho, me te ihu pupū.

He aha tēnei e tupu nei?

Nā te whakarerekētanga o te ira e kiia nei ko te GNAS1 i roto i tō tātou tinana tēnei. Ka puta tēnei i muri i te haputanga o te tamaiti i roto i te kōpū. Nā tēnei whakarerekētanga ira, ka whakararuraruhia te mahi a ngā pūtau e kiia nei ko ngā osteoblast, e āwhina ana i te tipu o te wheua. Ko te wā tēnā ka tīmata te hanga o taua kiko ngoikore, muka, kaua ko te wheua hauora.

Kāore anō kia tino mōhio ngā tākuta he aha te take o tēnei whakarerekētanga ira.

Me pēhea te kitenga a te tākuta i tēnei?

Ina haere koe ki te tākuta me te mamae tonu o te wheua, ka tirotirohia koe e ia i te tuatahi. Ka pātai atu ia ki a koe i ngā pātai maha, pēnei i te wāhi o te mamae, te roa o te mamae, me te āhua o te mamae. Kātahi ka mahia e ia ētahi whakamātautau hei whakaū i te mate.

• Ngā whakamātautau toto, mimi rānei: Ka tirohia e ēnei ngā taumata whākōkī i roto i te tinana. I ētahi wā, ko te nui haere o ēnei whākōkī he tohu pea nō te tipu rerekē o ngā kiko i roto i te tinana.
• Ngā whakamātautau whakaahua: Koinei ngā mea tino nui.
• Hiko-X: Ka taea e te hihi-X te kite ngāwari i ngā āhuatanga rerekē, ngā whati, me ngā huringa o te āhua o ngā wheua.
• Matawai CT, matawai MRI rānei: Ka taea e ēnei te whakarato i tētahi pikitia mārama ake, taipitopito ake hoki o te wheua me ngā kiko e karapoti ana.
• Biopsy: Mena kei te ruarua tonu te tākuta, ka tangohia e rātou tētahi wāhanga iti rawa o te kiko rerekē i raro i te rongoā whakamoe, ka tirotirohia i raro i te karuārai. Mā tēnei ka taea te whakaū i te mate me te 100% tino pono.

He aha ngā maimoatanga mō tēnei?

Ko te maimoatanga mō te Fibrous Dysplasia e whakawhirinaki ana ki ō tohu, te kaha o te mate, me tōna pānga ki tō oranga. Kāore he maimoatanga kotahi e pai ana mō te katoa.

Ko ngā tikanga maimoatanga matua ko:

1. Tirotiro: Ki te kore he tohu, he mamae rānei, kāore pea tō tākuta e tohu rongoā, engari me tono noa kia hoki mai koe ki te tirotiro i ia wā, i ia wā. Ko te tikanga o tēnei me tirotiro koe mēnā he huringa kei roto i tō āhua.

2. Rongoā: Ka taea te hoatu i ētahi rongoā (ina koa ko ngā bisphosphonates) hei āwhina i te whakapakari i ngā wheua me te ārai i ngā whati. Ka taea hoki e ēnei te whakaiti i te mamae o te wheua.

3. Te Whakapūmau: Mena ka puta tēnei āhuatanga i roto i te wheua, inā koa i te waewae o te tamaiti e tipu haere ana, ka tūtohutia pea he whakapūmau motuhake hei āwhina i te wheua kia tupu tika, kia ārai hoki i te piko.

4. Pokanga:

• Ki te whati te wheua (fractures), me pokanga hei whakatika.
• Mena he ngoikore rawa te wheua, he rerekē te āhua, ā, ka tino mamae, ka taea te tango i te kiko rerekē ka whakakapia ki tētahi hononga wheua hauora, ka taea rānei te whakauru i ngā tokotoko whakarewa hei whakakaha i te wheua.

Āhea koe me toro atu ki te tākuta?

Ki te mamae tonu ō wheua, kāore he take e kitea ana , kaua e warewaretia. Me toro atu ki te tākuta, me kōrero hoki mō tēnei.

Mena kua mōhio kē koe kei a koe te Fibrous Dysplasia, kōrero tonu atu ki tō tākuta mēnā:

• Ki te mea kei te kino haere ō tohumate.
• Ki te mea kei te whakaaro koe kāore ō maimoatanga o nāianei e āwhina ana.

Āhua ohorere!

Nā te mea ka ngoikore ngā wheua i te Fibrous Dysplasia, he nui ake te tūponotanga ka whati te wheua i ētahi atu. Nō reira, ki te hinga ohorere koe, ki te pā kaha ki te wheua, ki te pāngia rānei e te aituā motuka, haere tonu ki te Tari Ohotata (ETU) o te hōhipera tata. Ahakoa kāore e rite te āhua ki waho, tera pea he whati kei roto.

Me pēhea te noho tahi me tēnei mate?

Kāore he whakautu kotahi ki tēnei pātai, nā te mea he rerekē te pānga o te Fibrous Dysplasia ki ia tangata, ki ia tangata. Engari kotahi te mea e tino mārama ana: he mate mau tonu, mō te wā roa, kāore e taea te whakaora .

Engari kāore he take e mataku ai, e pouri ai rānei mōna. Ehara tēnei i te mate whakamate. Mā te maimoatanga me te whakahaere tika, ka taea te whakahaere i te pānga o tēnei mate ki tō oranga. Kāore pea koe e hiahia ki tētahi maimoatanga. Ahakoa e hiahiatia ana he maimoatanga, ka taea e ngā tikanga hauora o ēnei rā te āwhina i a koe ki te whakahaere i te mamae, te ārai i ngā whati, me te noho i te oranga noa, harikoa.

Mena kei a koe tēnei mate, kōrero noa ki tō tākuta kia mārama ai koe ki ngā mea ka tumanakohia ā muri ake nei i runga i tō āhua me ngā maimoatanga e pai ana mōu.