Kei te mātotoru haere tō kiri, kei te pakari haere? Me ako tātou mō te Scleroderma!

Kei te ahua matotoru ake, kei te piri ake rānei tō kiri i tōu āhua noa? Kei te mamae rānei ō hononga, kei te pakari rānei ōu i te ata? He mea ēnei kāore pea tātou e aro nui atu ki tēnā. Heoi anō, he tohu pea ēnei o tētahi mate onge e kiia nei ko te Scleroderma . Me kōrero tātou mō tēnei i tēnei rā, me pēhea?

He aha te Scleroderma?

He māmā noa iho, he mate onge te Scleroderma, ka matotoru ake, ka mārō ake ngā kiko o te tinana i te mea noa. I te nuinga o te wā, ka pā ki te kiri. Engari i ētahi wā, ka pā pea tēnei mate ki tētahi atu kiko o te tinana.

He mate pūnaha ārai mate tēnei. Tērā pea kei te whakaaro koe he aha te 'mate pūnaha ārai mate'. He pūnaha rite ki te ope taua tō tō tātou tinana e tiaki ana i a tātou mai i te mate, e kiia nei ko te pūnaha ārai mate. Engari i tēnei āhuatanga, ka hē taua pūnaha, ā, hei utu mō te whawhai ki ngā iroriki ke, ka tīmata te whakaeke i ō tātou ake pūtau pai. Me te mea nei kāore e taea e tātou te kī ko wai tō tātou ake, ko wai hoki te hoariri. Ahakoa ngā tākuta, kāore tonu e taea te mārama he aha tēnei e puta ai.

Ki te pāngia koe e te scleroderma, ka tukuna e tō pūnaha ārai mate he tohu ki ngā pūtau o tō tinana kia nui rawa te hanga o te pūmua e kiia nei ko te collagen . E hiahia ana ō tātou tinana ki te collagen. Koinei te mea e hanga ana i te kiko honohono kaha, hauora e tautoko ana i ō tātou whekau. Engari ki te nui rawa, ka matotoru ake, ka nui ake te muka o te kiri me ētahi atu kiko i te mea noa.

He mate mau tonu te Scleroderma. Ko te tikanga, me noho pea koe me ēnei tohu mō te wā roa, mō te toenga o tō oranga pea. Waihoki, ki te pā ki ngā kiko o ō whekau o roto, ka puta he raruraru morearea ki te ora. Ki te mea kei te pāngia koe e te mate manawa, he uaua ki te manawa, he uaua rānei ki te horomi, waea atu ki te 911 (ki tō nama urupare ā-rohe rānei), haere rānei ki te rūma urupare o te hōhipera.

Mena he mamae, he kōpiko rānei ō hononga, inā koa i te taha o ō maihao me ō matimati, me toro atu koe ki te tākuta.

He aha ngā momo matua o te Scleroderma?

E rua ngā momo matua o te scleroderma e wehewehea ana e ngā tākuta:

1. Scleroderma Ā-rohe: Ko te tikanga o te 'Ā-rohe' he mate kua herea ki tētahi wāhi. Kotahi anake te wāhanga o te tinana e pāngia ana e tēnei momo (ko te kiri te nuinga). Ka puta he kiri matotoru, he kiri ware pi, he kiri pīataata rānei. Ko te mea pai rawa atu, ka taea e te scleroderma ā-rohe te memeha noa iho i ētahi wā . Kāore hoki e horapa ki ētahi atu wāhanga o te tinana.

2.Te Mate Pūnaha: Ka pā pea tēnei momo ki ētahi atu okana, haunga te kiri. Ka pā pea ki tō pūnaha manawa (te okana e āwhina ana i a koe ki te manawa me te hongi) me tō pūnaha nakunaku (te okana e huri ana i te kai e kainga ana e tātou hei pūngao). Mena ka pāngia tō kaha ki te manawa, ki te mimiti rānei i ngā matūkai e te mate pūnaha, ka nui ake te tūponotanga ka pāngia koe e ngā raruraru nui. Ka mate pea koe. E toru ngā momo o te Mate Pūnaha – te mate horapa, te mate iti, me te mate sinus.

Te Mate Pukupuku Marara

Ko te tikanga o te kupu 'marara' ko te 'whanui'. I tēnei āhua, ka puta ohorere te mate urutā marara ki ngā wāhi nui o te tinana. Hei tauira:

• Uma
• Puku
• ngā huha
• Ngā patu
• Waewae
• Kanohi

Waihoki, ka pā pea ki ētahi okana i te wā kotahi. Ko te tikanga o tēnā:

• Pūnaha nakunaku (Pūnaha nakunaku - ara GI)
• Ngā whatukuhu
• Ngākau
• Ngā pūkahukahu

Te Mate Pukupuku iti (te mate CREST)

He maha ngā wā ka tapaina e ngā tākuta te Limited Scleroderma ko te CREST syndrome . Ko ia reta i roto i te CREST e tohu ana i tētahi tohu e puta mai ana i taua tohu:

• C - Calcinosis: He nui rawa ngā putunga konupūmā i roto i te kiri. Ka puta mai pea hei pupuhi ma iti i runga i te kiri.
• R - Te mate a Raynaud: Te rerekētanga o te tae me te ngoikore o ngā pito o ngā maihao me ngā matimati. Ka huri pea hei mā, hei kikorangi, hei whero rānei ina pāngia e te makariri.
• E - Te ngoikore o te korokoro: Te uaua ki te horomi me te rerenga waikawa.
• S - Sclerodactyly: Te kikī o te kiri o ngā maihao, e uaua ai te piko me te whakatika i ngā maihao.
• T - Telangiectasias: He iti, he whero, he pōuri rānei ngā ira i runga i te kiri. Tērā pea he rite ēnei ki te tukutuku pungawerewere.

Te Sclerosis Sine

Mō te Sine Sclerosis, ka puta ngā tohu o te Limited Sclerosis i whakahuatia ake nei, engari kāore te kiri e pāngia . Arā, tera pea kei a koe ētahi o ngā tohu kua whakahuatia i roto i te CREST syndrome, engari kāore he matotoru e kitea ana o te kiri.

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He pēhea te noa o te Scleroderma?

He mate tino onge te Scleroderma.E ai ki ngā whakatau tata a ngā tohunga, tata ki te 250 i roto i te miriona tāngata i te Hononga o Amerika he momo scleroderma e toru. I roto i ēnei, tata ki te 100,000 tāngata he sclerosis pūnaha.

He aha ngā tohu o te Scleroderma?

Kāore pea ētahi o te hunga e pāngia ana e te scleroderma e whakaatu i ngā tohu i ngā wāhanga tōmua. Heoi, mō te tini, ko te tohu matua ko te putanga mai o ngā wāhi matotoru, he rite ki te ware pi, ngā rārangi rānei i runga i te kiri. Hei tāpiri, he maha atu anō ngā tohu noa:

• Mamae hononga
• Te pakari , ina koa i te oho ake i te ata
• Ngenge (te tino ngenge i ngā wā katoa)
• Te whakahekenga taumaha kāore i te whakamāramahia

Ko ētahi atu tohu e pā ana ki a koe (me te wāhi e pāngia ai koe) ka whakawhirinaki ki te momo scleroderma kei a koe.

Ngā Tohu o te Scleroderma Ā-Rohe

Ko te hunga whai scleroderma ā-rohe ka mātotoru noa iho te kiri . Tērā pea ka mātotoru tēnei i te kotahi wāhi, ka puta rānei i ngā wāhi iti. Ka pā pea ki ēnei wāhi o te kiri:

• Uma
• Puku (te rohe e karapoti ana i te puku)
• Ngā ringaringa me ngā waewae (Ō ringaringa me ō waewae)
• Ngā ringaringa me ngā maihao
• Waewae me ngā matimati

Heoi, he tino onge te scleroderma ā-rohe, e pā ana ki ngā whekau o roto.

Ngā Tohu o te Sclerosis Pūnaha

Ka taea e te mate kiri pūnaha te whakaputa i ngā momo tohu. Ka meinga hoki te kiri kia matotoru, engari i ngā wāhi whānui me ngā wāhi iti. Ina koa i te mata me ngā ringaringa. Ka tīmata pea te kiri matotoru i ngā maihao me ngā matimati, kātahi ka horapa puta noa i te tinana. Mena kei a koe te mate Raynaud , ka huri pea te tae o ngā maihao me ngā matimati o te peka e pāngia ana ina pāngia e te makariri (he mā, he whero, he kikorangi-papura rānei te nuinga).

Ka taea hoki e te sclerosis pūnaha te whakaputa tohu i roto i ō whekau me ō kiko kē atu. Hei tauira:

• Uaua: Te ngoikore me te pupuhi, inā koa i ngā ringaringa me ngā waewae (ngā pito o ō peka).
• Ngā hononga: Te pakari, te pupuhi, me te ngaronga o te nekenekehanga.
• Ngā pukahukahu: Maremare me te uaua ki te manawa (dyspnea).
• Ara nakunaku: Te koretake o te kai, te mamae o te ngākau, te pupuhi, te kōroke, me te mate korere.
• Ngākau:Te pā o te ngakau ki ngā uaua rerekē (arrhythmia), te kohikohinga wai i te taha o te ngākau (pericardial effusion), me te matotoru o te uaua o te ngākau (fibrosis).
• Ngā whatukuhu: Te ngoikore o te whatukuhu (ka mate pea tēnei).
• Ngā ira tāne: Te ngoikore o te ure (ED) i roto i ngā tāne me te maroke o te tara i roto i ngā wāhine.

He aha te take o te Scleroderma?

Ina hoki, kāore anō kia mōhiotia e ngā tākuta te tino pūtake o te scleroderma.

Kua kitea e ētahi rangahau ka taea te horapa i roto i ngā whānau tae noa ki tētahi taumata (arā, ka taea te tuku mai i ngā mātua ki ngā tamariki), engari he tino onge, kāore i te rawaka ngā taunakitanga hei whakaatu tuturu he mate ira tēnei .

Ngā Take Mōrearea o te Scleroderma

Ka taea e te tangata katoa te pāngia e te scleroderma, engari he nui ake te mōrearea o ētahi rōpū:

• E whā ngā wā ka nui ake te tūponotanga o ngā wāhine ki te pāngia e tēnei mate i ngā tāne.
• Ko te nuinga o te wā ka pā ki te hunga i waenga i te 30 me te 50 tau te pakeke. He tino onge te Scleroderma i roto i te hunga kei raro iho i te 30 tau te pakeke.
• He nui ake te tūponotanga o te hunga mangu ki te pāngia e te scleroderma. Ka pā wawe atu hoki te mate ki a rātou, he nui ake te tūponotanga ka pāngia e ngā tohu e pā ana ki ngā pukahukahu, ā, he kino ake ngā tohu kiri.

He aha ngā raruraru ka pā mai i te Scleroderma?

He nui ake te mōrearea o te hunga whai scleroderma ki te whakawhanake i ētahi atu mate e rua: te mate a Raynaud me te mate a Sjögren .

Ka pāngia ngā uaua toto iti o ō matimati me ō matimati e te mate a Raynaud . Ka pāngia te hunga whai mate nei e ngā tohumate (e kiia ana ko ngā 'whakaeke'). Koinei te wā ka pēhia ohoreretia ngā uaua toto o ō matimati kia tino piri rawa. Ka taea e tēnei te meinga te kiri o ngā matimati e pāngia ana kia mā, kia mārama ake rānei i te tae tūturu o tō kiri. I ētahi wā, ka puta he kikorangi.

Nā te mate Sjögren ka iti ake te makuku o ētahi o ngā repe o tō tinana – ko te nuinga o te wā ko ngā repe huware i roto i tō waha me ngā repe roimata i roto i ō kanohi. Ka mamae hoki ngā uaua me ngā hononga o ētahi tāngata e pāngia ana e te mate Sjögren.

Ka taea e ētahi momo scleroderma te whakararu i ngā raruraru nui . Ko ētahi o ēnei ko:

• Te ngoikore o te whatukuhu
• Te toto toto tiketike (te toto toto tiketike i roto i ngā uaua e kawe ana i te toto mai i te ngākau ki ngā pukahukahu)
• Te mate pukupuku (te whara o te kiko o te pukahukahu)
• Ngā mate pūnaha manawa (ngā raruraru e pā ana ki tō ngākau me ō oko toto)
• Te ngoikore o te ngakau, he mate ngakau
• Te ngoikore o te ārai mate
• Ngā mate puku (ngā āhuatanga e pā ana ki te tukatuka kai me te mimiti o ngā matūkai e te tinana)
• Matepukupuku

Ka mate pea ētahi o ēnei raruraru. Mēnā ka kite koe i ētahi tohu hou, i ētahi tohu rerekē rānei, me toro atu ki te tākuta i te wā e taea ai. Mēnā kei te whakaaro koe he tohu kei a koe mō te mate manawa, pērā i te uaua ki te manawa, te horomi rānei, waea atu ki te 911 (ki tō nama urupare ā-rohe rānei), haere rānei ki te rūma urupare o te hōhipera.

Me pēhea te tātaritanga o te Scleroderma?

Ka tātaritatia te scleroderma e te tākuta mā te whakamātautau tinana me ētahi atu whakamātautau.

Me toro atu pea koe ki tētahi tākuta rumatiki , he tākuta e tohunga ana ki te rongoā i ngā mate o te pūnaha ārai mate. Māna koe e tirotiro, ka pātai atu hoki mō ō tohumate. Me kōrero e koe ki tō tākuta he aha ō tohumate, nōnahea i tīmata ai, me te mea kei te kino haere pea tētahi mea.

Me whai whakamātautau anō hoki koe kia mōhio ai kāore he mate kē atu e pā mai ana i ngā tohu rite.

He aha ngā whakamātautau e whakamahia ana e ngā tākuta hei tautuhi i te Scleroderma?

Ko te tātaritanga o te scleroderma he wāhanga o tētahi tukanga e kiia nei ko te 'tataritanga rerekē'. Ko te tikanga tēnei ka whakakorea pea e tō tākuta ētahi atu āhuatanga, ā, ka whakahaerehia e ia ētahi whakamātautau hei rapu i te take o ō tohumate i mua i te tātaritanga o te scleroderma. Anei ētahi o ngā whakamātautau ka taea e koe:

• Ngā whakamātautau toto hei tirotiro i te mahi a tō pūnaha ārai mate.
• Ngā whakamātautau mahi a ō pukahukahu hei tirotiro mēnā kei te pāngia ō pukahukahu, tō pūnaha manawa rānei.
• He tikanga te koiora e tangohia ai he tauira iti o te kiri, o tētahi atu kiko rānei kua pāngia, ka whakamatautauria i roto i te taiwhanga.
• Mena kei a koe ngā tohumate nakunaku (GI), he whakamātautau endoscopy e titiro ana ki raro i tō korokoro, i tō puku rānei mā te whakamahi i tētahi kāmera iti e piri ana ki tētahi ngongo roa, angiangi.

Hei tāpiritanga, me whai koe i ētahi whakamātautau whakaahua hei tango pikitia o roto o tō tinana. Kei roto i ēnei ko:

• Te hiko o te manawa (ECG)
• Te Echocardiogram - Echo)
• He hihi-X o te uma
• He matawai CT (Tomography Rorohiko - matawai CT)

Me pēhea te rongoā mō te Scleroderma?

Kāore he rongoā mō te scleroderma , engari ka taea e tō tākuta te āwhina i a koe ki te kimi i tētahi huinga maimoatanga hei āwhina i te whakahaere i ō tohu me te whakaiti i tōna pānga ki tō oranga o ia rā.

Ko te momo maimoatanga e hiahiatia ana e koe ka whakawhirinaki ki te wāhi o ō tohu me te kaha o aua tohu. Anei ētahi maimoatanga noa mō te scleroderma:

• Ngā maimoatanga kiri: Me whakamahi koe i ngā kirimi me ngā whakamākūkū hei ārai i te maroke o tō kiri.
• Ngā rongoā ārai mate: Ka aukati ēnei rongoā i tō pūnaha ārai mate kei kino ngā pūtau me ngā kiko hauora.
• Ngā rongoā hei whakahaere i ngā tohumate motuhake: Hei tauira, me tango pea koe i ngā rongoā hei whakahaere i tō toto totoka, hei whakahaere i te manawa, hei whakahaere i te ngoikore o te whatukuhu, hei whakaora rānei i ngā tohumate nakunaku.
• Whakaora tinana: Ka taea e te kaiwhakaora tinana te āwhina i a koe ki te whakapai ake i ō nekehanga tinana.
• Whakaora-ataata: Kei roto i tēnei ko te whakamahi i te mārama hihi ultraviolet (UV) kanapa, arotahi hei rongoā i ngā mate kiri. Ka taea e tēnei te āwhina i te rongoā i te kiri matotoru.
• Te whakawhitinga pūtau take: Ko ētahi tāngata he nui ngā tohumate e hiahia ana ki te whakawhitinga pūtau take. Ko te tikanga o tēnei ko te whakakapi i ngā pūtau toto kua pakaru ki ngā pūtau kaituku hauora.

Mena kei a au te Scleroderma, he aha taku e tumanako atu ai?

Me tumanako koe ka taea e koe te whakahaere i te scleroderma me ōna tohu mō te toenga o tō oranga . Ahakoa kāore he rongoā tuturu, he maha ngā tāngata e kimi ana i ngā maimoatanga me ngā huringa momo noho hei whakaiti i te pānga o ō rātou tohu ki ō rātou oranga o ia rā.

He tino whakarihariha te noho me te mate roa i ētahi wā. Pātai atu ki tō tākuta mō ngā rōpū tautoko, ngā whai wāhitanga mātauranga rānei hei āwhina i a koe ki te whakahaere i tō ahotea me tō hauora hinengaro.

Ka taea te ārai i te Scleroderma?

Nā te mea kāore i te mōhiotia te tino take, kāore he huarahi hei ārai i te scleroderma .

Me pēhea taku tiaki i ahau anō? (Te tiaki i ahau anō)

Haunga ō maimoatanga o ia rā, ka taea pea e koe te whakahaere i ētahi tohu mā te hanga i ētahi huringa ki tō āhua noho o ia rā. Ko ētahi o ēnei ko:

• Te whai i tētahi kai hauora me tētahi mahere whakakori tinana e tika ana māu.
• Te karo i ngā mahi whakakori tinana kaha ina kore koe e pai te āhua.
• Tiakina tō kiri mā te whakakakahu i ngā kākahu e tika ana mō te taiao e karapoti ana i a koe, me te pani i tētahi hinu ārai-rā kounga teitei ina haere koe ki waho.
• Haere ki te tākuta niho (kaitiaki niho) mō te horoi niho me te tirotiro i ngā niho i ia wā.

Āhea ahau me toro atu ki taku tākuta?

Ka puta he maha ngā tohu i te Scleroderma, nō reira he uaua ki te kite i te tīmatanga. Mena he mamae hou tōu, he tohu rānei, inā koa ka kino haere, me toro atu ki te tākuta. Ahakoa he mea kē atu te take o ō tohu, ka taea e tō tākuta te tautuhi i te take me te tūtohu i ngā maimoatanga hei whakahaere i aua tohu.

Ki te kore e pai te haere o tō maimoatanga mō te scleroderma, ki te rerekē rānei ō tohu, ki te kino haere rānei – ina koa ka pā ki tō kaha ki te manawa, ki te horomi rānei – kōrero ki tō tākuta.

Āhea ahau me haere ki te Wāhanga Maimoatanga Ohotata (ETU) ?

Mena kei a koe ngā tohu o te mate manawa , pērā i te mamae o te uma, te uaua ki te manawa, te āhua rānei kāore e taea e koe te horomi, waea atu ki te 911 (ki tō nama urupare ā-rohe rānei), haere rānei ki te tari urupare o te hōhipera.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Kaua e wareware ki te pātai i ēnei pātai ina kite koe i te tākuta:

• He Scleroderma tōku, he mate kē atu rānei?
• He aha te momo Scleroderma kei a au?
• He aha te momo maimoatanga e hiahiatia ana e au?
• He aha ngā raruraru me tino mōhio ahau?

He aha te roanga o te oranga o te tangata e pāngia ana e te Scleroderma?

Ko te nuinga o te hunga e pāngia ana e te scleroderma kāore e pāngia e ngā raruraru e morearea ai te ora .

Heoi, ki te mea he mate pūnaha tōu, e pā ana ki ngā whekau o roto, he nui ake tō tūponotanga ki ngā raruraru kino. Ma tō tākuta koe e kī atu ki ngā mea hei tumanako atu, me te mea hoki he nui ake tō tūponotanga ki ngā raruraru whakamate.

He mate kino te Scleroderma?

Pērā i tētahi atu mate pūmau, he mate kino te scleroderma.Nā te mea pea me aro atu koe ki ngā tohu mō te toenga o tō oranga. Heoi, ehara i te mea ka noho ko te Scleroderma hei rangatira mō tō oranga. He rerekē ngā wheako o te katoa. Kōrero ki tō tākuta mō ō wehi, ō ruarua, me ō āwangawanga.

He tino whakarihariha te noho tahi me te Scleroderma. Nā te mea kāore ngā tākuta i te tino mōhio he aha te take, ā, kāore hoki he rongoā kotahi e tika ana mō te katoa, ka roa pea te wā ki te kimi i tētahi rongoā hei whakahaere pai i ō tohumate. Ma tō tākuta koe e āwhina i ia taahiraa o te ara.

Whakawhirinaki ki ō kare ā-roto, me te whakawhirinaki ki ngā mea e ahua 'kāore i te tika'. Ahakoa he iti noa te panoni o ngā tohu, he tohu pea tēnei mō tētahi raruraru me tirotirohia e tō tākuta. Kaua e wehi ki te pātai me te whakapuaki i ō whakaaro mō ō tohu, mō te maimoatanga rānei.

He tino hoha te noho me te mate pūmau. Me whai wā koe ki te whakaute me te whakamihi i a koe anō mō ​​te mahi uaua i whakapaua e koe ki te whakahaere i ō tohumate.

Ngā mea nui hei maumahara māu (Karere hei tango ki te kāinga)

Āe, kua maha ā tātou kōrero mō te Scleroderma. Hei whakamutunga, anei ngā mea tino nui hei maumahara māu:

• He mate onge te Scleroderma, he mate pūnaha ārai mate e nui rawa ai te collagen e whakaputaina ana e te tinana, ka matotoru ai te kiri, me ētahi o ngā whekau o roto.
• E rua ngā momo matua o tēnei: ​​te ā-rohe me te ā-pūnaha. He ahua morearea ake te momo ā-pūnaha nā te mea ka pā hoki ki ngā whekau o roto.
• He rerekē ngā tohu. Ko ngā tohu matua ko te matotoru o te kiri, te mamae o ngā hononga, te ngenge, me te mate a Raynaud.
• Ahakoa kāore he rongoā tuturu, he maimoatanga whai hua kei reira hei whakahaere i ngā tohumate. Kōrero ki tō tākuta, ka whakawhanake i tētahi mahere maimoatanga e tika ana māu.
• He mea tino nui te tautuhi me te maimoatanga wawe. Nō reira, ki te pā mai ēnei tohu ki a koe, me rapu tohutohu hauora.
• He mate roa tēnei, he mea nui kia kaha tonu te hinengaro. Mēnā e tika ana, rapua he āwhina mai i ngā rōpū tautoko.

Kaua e manukanuka, ehara i te mea ko koe anake. Mā te mātauranga tika me ngā tohutohu hauora, ka taea e koe te ora angitu me tēnei mate.