Me kōrero tāua mō tētahi mate onge e kiia nei ko te C3G (Complement 3 Glomerulopathy), e pā ana ki ngā whatukuhu?

Kei te pāngia koe e te toto i roto i tō mimi i ētahi wā, e te pupuhi rānei i ō waewae? Kei te ngenge tonu rānei koe? I ētahi wā, nā te raruraru o ō whatukuhu ēnei. I tēnei rā ka kōrero tātou mō tētahi āhuatanga onge engari he tino nui e pā ana ki ngā whatukuhu. Koia te C3G (C Three G) ko te "Complement 3 Glomerulopathy" rānei.

He aha te C3G (Complement 3 Glomerulopathy)?

Ki te whakarapopoto, he rōpū mate a C3G e pā ana ki te pai o te mahi a ō whatukuhu. Kei te mōhio koe, he rite ngā whatukuhu ki ngā tātari e rua i roto i ō tātou tinana. Ko tā rātou mahi matua he tātari i te toto, te tango i ngā para koretake me te wai nui, me te hanga mimi.

He pūmua motuhake te "Whakakī 3" i roto i ō tātou toto. He mea tino nui mō te pūnaha ārai mate e whawhai ana ki ngā mate o roto i ō tātou tinana. Ko te "Glomerulopathy" he pakaru ki ngā glomeruli, arā, he oko toto iti kei roto i ngā whatukuhu, he rite ki ngā mata iti. Ko ēnei glomeruli ngā mea e tātari ana i te toto.

Kātahi ka puta ko te C3G he mate e pā ana ki te pūmua 'whakakotahitanga 3', e kino ai ngā 'glomeruli' me te whakararu i te mahi a ngā whatukuhu. I mua, arā, i mua i te tau 2013, i tapaina tēnei e ngā tākuta ko te "Membranoproliferative glomerulonephritis (MPGN) momo I, II, III rānei" ko te "Mesangioproliferative glomerulonephritis" rānei. Engari i nāianei ka kiia tēnei rōpū mate ko te C3G.

He momo C3G anō kei reira?

Ae, e rua ngā momo matua o te C3G. Ka whakatauhia e ngā tākuta ēnei momo e rua mā te tango i tētahi wāhanga iti o te whatukuhu (e kiia ana e mātou he 'koiora whatukuhu ') ka tirohia i raro i te karuārai, i runga i te kino me te mumura o ngā 'glomeruli'.

• Mate putunga matotoru (DDD): I mua ko te momo MPGN II, ko tēnei mate e tohuhia ana e te hanganga o ngā putunga matotoru, rite ki te rīpene i roto i te kiriuhi papa raro o te glomerular (GBM), te arai o ngā glomeruli. Ko te nuinga o te wā ka pā ki ngā tamariki me ngā taiohi i te tīmatanga o ō rātou tau 20.

• `C3 glomerulonephritis` (C3GN): I mua ko te ingoa ko `MPGN momo I` ko `III` rānei. I roto i tēnei, kāore e kitea ngā putunga matotoru pērā i ngā mea e kitea ana i roto i te DDD. Ko te nuinga o tēnei ka pā ki te hunga neke atu i te 30 tau te pakeke.

He mate mau tonu te C3G?

Ae, he mate pūmau te C3G. Ko te tikanga ehara i te mea ka puta ohorere mai, ka ora ake, ā, ka piki haere pea te kino o ngā whatukuhu i roto i te wā. Nō reira, he mea nui kia tūpato ki tēnei.

He pēhea te noa o tēnei C3G?

He mate tino onge tēnei.E ai ki ngā tākuta, e rua ki te toru ngā tāngata e pāngia ana e tēnei mate i roto i te rau mano. Nō reira, kāore pea koe i rongo nui mō tēnei mate. Ahakoa he onge, he mea nui kia mōhio koe ki tēnei mate.

He aha ngā tohu o te mate C3G?

Nā, kia tirohia tātou ngā tohu o tēnei mate C3G. He maha ngā āhuatanga noa o ngā momo e rua, he mea nui kia mōhiotia:

• Te toto i roto i te mimi ( hematuria ): I ētahi wā ka whero te āhua o te mimi, he iti noa iho rānei ka kitea i raro i te karuārai.
• Te nui rawa o te pūmua i roto i te mimi (proteinuria): Ka puta te huka i roto i te mimi.
• Te iti iho o te mimi e puta ana i te tikanga (oliguria).
• Te hekenga o te taumata pūmua i roto i te toto (hypoalbuminemia).
• Pupuhi (edema): Ina koa i ngā ringaringa, i ngā pona waewae, me ngā waewae. Whakaarohia, ki te ara ake koe i te ata ka pupuhi ō waewae, tera pea he rite ki tēnei.
• Te toto toto tiketike (te toto toto tiketike).
• Ngā mate urutā e hokihoki mai ana.
• Te ngenge rawa (‘Te Ngenge’): Ehara i te ngenge noa iho, engari he kare ā-roto kei te ngenge tonu koe ahakoa te roa o te moe.
• Tērā pea ka pāngia ētahi tāngata e ngā mate pēnei i te kauti .

Ka taea e ēnei tohu e rua te arahi ki te ngoikore o te whatukuhu . Ka taea hoki e te ngoikore o te whatukuhu te whakaputa i ngā tohu pēnei i:

• Ngenge tonu.
• Whakapairuaki, ruaki.
• Te uaua ki te whakatau, te ngakaukore.
• Te pupuhi o te tinana.
• He nui ake te mimi e puta ana i te nuinga o te wā (ka kitea pea tēnei i ngā wāhanga tōmua o te ngoikore o te whatukuhu).

Haunga ngā whatukuhu, ka taea hoki e te C3G te whakaputa i ētahi atu tohu. Kei roto i ēnei ko:

• Ngā raruraru tirohanga: Ka ngoikore pea te tirohanga nā te kohikohinga o ngā putunga pūmua me te konupūmā (drusen), inā koa i roto i te macula.
• Lipodystrophy: He āhuatanga tēnei e ngaro ai te ngako i ētahi wāhi o te tinana (ina koa ko te mata me ngā peka).

He aha i hangaia ai tēnei C3G?

Āe, me titiro tātou he aha i hangaia ai tēnei C3G. He ahua uaua tēnei, engari ka whakamārama māmā noa iho ahau. Ka puta tēnei ina kore e mahi tika te "pūnaha tāpiri" i roto i tō tātou tinana. Ko tēnei "pūnaha tāpiri" he kohinga pūmua i roto i ō tātou toto. He wāhanga tēnei o tō tātou pūnaha ārai mate. Ka āwhina tēnei ki te whawhai i ngā mea pēnei i te huakita me ngā huaketo e puta mai ana i waho.

Ko te mea ka pā ki te tangata whai C3G, ka nui rawa te whakahohenga o tēnei 'pūnaha tāpiri', ka kore rānei e taea te whakahaere. Kātahi ka pakaru te pūmua 'tāpiri 3 (C3)'. Ka mau ēnei maramara pūmua C3 kua pakaru ki roto i ngā 'glomeruli'. Kātahi ka uaua ki ngā 'glomeruli' te tātari toto me te hanga mimi. Ki te kore e rongoatia, ka haere tonu tēnei kino, ā, ka arahi ki te ngoikore o te whatukuhu.

He uaua ki te tohu i te tino take e kore ai e pai te "pūnaha whakamihi". Engari i ētahi wā:

• Ka taea te whakawhanake i te C3G nā ngā panonitanga o ō tātou ira (ngā whakarerekētanga ira e pā ana ki te pūnaha tāpiri, pērā i te ``C3`` me te ``CFH``).
• Ka taea hoki e te mate toto e kiia nei ko te "Monoclonal gammopathy" te kino ā-korekore i ngā whatukuhu, te whakararuraru i te mahi a te pūnaha "whakakī", ā, ka arahi ki te hanganga o te C3G. Ko tēnei "monoclonal gammopathy" he āhuatanga e pā ana ki ngā pūtau plasma i roto i tō tātou hinu wheua.
• E whakapae ana ngā kairangahau hauora he mahi anō pea tā tētahi mea e kiia nei ko ngā "autoantibodies". Ko ngā "autoantibodies" he pūmua i hangaia e tō tātou ake pūnaha ārai mate e whakaeke hē ana i ō tātou ake kiko hauora. Heoi, kāore i te rawaka ngā rangahau hei kī pono ko ēnei "autoantibodies" te take o te C3G.

Ko wai te hunga e tino pāngia ana e tēnei mate C3G?

Ka taea e te tangata te pāngia e tēnei mate C3G. He ōrite te pānga ki ngā tāne me ngā wāhine. Ko te tau toharite mō te tātaritanga he tata ki te 23 tau. Heoi, ko te momo `DDD` i kōrerotia i mua ake nei ka puta mai i te wā taitamariki ake i te momo `C3GN`.

He aha ngā raruraru pea ka pā mai i te C3G?

Ko te raruraru matua, me te mea tino morearea , ko te tata ki te 50% o te hunga whai C3G, ara, kotahi i roto i te tokorua, ka pāngia e te ngoikore o te whatukuhu i roto i ngā tau 10 o te tātaritanga. Koinei te mea e tino wehi ai tātou katoa.

Me pēhea te tautuhi i te mate C3G?

Ka whakahaerehia e te tākuta ētahi whakamātautau hei tirotiro i te hauora o ō whatukuhu me te pai o tā rātou mahi. Kei roto pea i ēnei:

• Ngā whakamātautau toto: Ka tangohia he tauira toto iti mai i tētahi uaua i tō ringa, ā, ka tirohia e te taiwhanga mēnā he noa ō pūmua tāpiringa, mēnā rānei he nui rawa ngā para (hei tauira, te creatinine) i roto i ō toto.
• `Te Auau Tātaritanga o te Hukapapa Matatau (eGFR): He whakamātautau tēnei e ine ana i te pai o te tātaritanga a ō whatukuhu i ō toto, i runga i te nui o te `creatinine toto`, `cystatin C` rānei i roto i te tauira toto. Mā tēnei ka taea e koe te mōhio ki te pai o te mahi a ō whatukuhu.
• Te tātari mimi: Me mimi koe ki roto i tētahi kapu motuhake, ka hoatu te tauira ki tō tākuta. Ka tirohia e te taiwhanga te pūmua, te toto rānei i roto i te mimi, ā, ka kitea noa iho ēnei i raro i te karuārai.
• Ko te koiora whatukuhu: Koinei te meaKo te huarahi pai ki te tautuhi tika i te mate C3G ko te whakamahi i te koiora. I roto i tēnei, ka tangohia e te tākuta tētahi wahi iti o te kiko mai i tō whatukuhu mā te whakamahi i tētahi ngira angiangi, i tētahi tapahi iti rānei, ka whakamātautau i roto i tētahi taiwhanga. Mena kei roto i tēnei tauira ngā wahi o te pūmua C3 kua pakaru i roto i ō glomeruli, tera pea he mate C3G. Ka taea hoki e tēnei koiora te whakaatu ki a koe ko tēhea momo C3G kei a koe (DDD, C3GN rānei), i runga i te mea kei a koe aua putunga totoka.

Ka taea te whakaora katoa i te C3G?

Engari, kāore anō kia kitea he rongoā mō te mate C3G i tēnei wā. Kaua e manukanuka, kei te haere tonu ngā tākuta me ngā kairangahau ki te ako i tēnei mate, ā, kei te mahi tonu rātou ki te kimi i ngā maimoatanga hou. Ko te tumanako ka puta mai he maimoatanga pai ake a muri ake nei.

He aha ngā maimoatanga mō te C3G?

Kāore anō kia whakaaetia he maimoatanga motuhake e te U.S. Food and Drug Administration (FDA) mō te C3G i tēnei wā. Heoi anō, ka taea e ngā tākuta te tohu i ngā momo maimoatanga me te manaaki tautoko hei whakaroa i te whanaketanga o te C3G, hei whakahaere i ngā tohu, hei whakaiti hoki i te kino o te whatukuhu. Kei roto i ēnei ko:

• Ngā rongoā toto toto tiketike: Ka whakaitihia te pēhanga i roto i ngā glomeruli e ngā rongoā pēnei i te angiotensin-converting enzyme (ACE) inhibitors me te angiotensin II receptor blockers (ARBs). Ka whakaitihia te nui o te pūmua i roto i te mimi, ā, ka whakaitihia hoki te taumahatanga ki ngā whatukuhu.
• Ngā rongoā whakaheke cholesterol: Ka tohua pea e tō tākuta ngā rongoā pēnei i ngā statin hei whakaheke i te cholesterol me te whakaiti i te kino ki ō whatukuhu.
• Ngā whakarerekētanga kai: Mā te tohunga kai whatukuhu koe e āwhina ki te whakawhanake i tētahi mahere kai e tika ana māu, ā, ka āwhina hoki i a koe ki te pupuri i tō taumaha hauora. Mā te whakaiti i te tote (konutai), te ngako kukū, me te cholesterol e kai ana koe ka āwhina i te whakaiti i te kino o te whatukuhu.
• Corticosteroids: E mōhiotia ana ko "steroids," he rongoā anti-inflammatory ēnei e mahi ana mā te aukati i te pūnaha ārai mate kei whakaeke i ō glomeruli.
• Eculizumab: He rongoā paturopi monoclonal tēnei e whakamahia ana hei rongoā i ngā mate toto onge. Tērā pea ka āwhina i te whakapai ake i te mahi a te whatukuhu mā te whakaiti i te pūmua i roto i te mimi me te whakanui ake i te tere tātari glomerular i roto i ētahi tūroro C3G.
• Dialysis: E kiia ana he ngoikore ngā whatukuhu tata ki te 50% o te hunga whai C3G. Ko te dialysis te wā e ngoikore ai ngā whatukuhu, ā, ko te mahi e tika ana kia mahia e ngā whatukuhu (te horoi i te toto, te tango i ngā para, me te wai nui) ka mahia mā te āwhina o tētahi mīhini.
• Te whakawhitinga whatukuhu: He maimoatanga anō tēnei mō te ngoikore o te whatukuhu. Ka tangohia e te taote pokanga tō whatukuhu e ngoikore ana, ka whakakapia ki tētahi whatukuhu hauora mai i tētahi kaituku.

Mena kei a koe te 'DDD' me te 'C3GN' rānei, ā, kei a koe anō te 'monoclonal gammopathy', ka tūtohu tō tākuta i ētahi atu whakamātautau hei tirotiro mō ētahi atu mate huna.

He aha te tirohanga mō te mate C3G?

Tata ki te haurua o ngā tūroro e pāngia ana e te C3G ka pāngia e te ngoikore o te whatukuhu i roto i ngā tau 10 o te tātaritanga. Kāore anō kia kitea he rongoā mō te ngoikore o te whatukuhu i tēnei wā. Heoi, mā te tātaritanga tika me te maimoatanga tere, ka taea e koe te ora roa, hauora hoki me te kore he huringa nui. Nō reira, he mea nui kia noho marino, kia whai hoki i ngā tohutohu a tō tākuta.

Ka taea te ārai i te mate C3G?

Engari, kāore he huarahi i tēnei wā hei ārai i te mate C3G, nā te mea he maha ngā āhuatanga kāore e taea e tātou te whakahaere e hua mai ai.

Me pēhea taku tiaki i ahau anō?

Mena kei a koe te C3G, mā tō tākuta e whakawhanake te mahere maimoatanga pai rawa atu māu. Tērā pea kei roto i tēnei ko te rongoā, te manaaki tautoko, me ngā huringa āhua noho. Tērā pea kei roto i tō mahere maimoatanga ēnei e whai ake nei, ā, he mea nui kia whai i ēnei mahi:

• Tangohia tō rongoā kia rite ki te whakahau a tō tākuta. Kaua e mahue tetahi rā.
• Te whakarerekē i tō kai, te whakaiti i te tote, te hinu, me te huka, me te kai i ngā hua me ngā huawhenua.
• Āta karohia te whakamahi i ngā rongoā anti-inflammatory kore-steroidal (NSAID) (hei tauira, ngā rongoā whakamamae mamae pēnei i te ibuprofen me te diclofenac) me te kore tohutohu hauora, nā te mea ka taea e ēnei te kino i ngā whatukuhu me te whakateretere i te ngoikore o te whatukuhu.
• Te tiaki i tō hauora hinengaro. Mā te mate onge pēnei ka mokemoke koe, ka mataku hoki. Waihoki, mā te mōhio ka taea e te C3G te whakararu i te whatukuhu ka nui ake te tūponotanga o te pāngia e te pouri. Kōrero ki tō tākuta mō tō hauora hinengaro, ā, rapua he tohutohu me he maimoatanga mēnā e tika ana. Pātai atu ki tō tākuta mō ngā rōpū tautoko mō te hunga whai C3G. Mā te tūtaki ki ētahi atu tāngata whai C3G ka āwhina i te whakaiti i te mokemoke me te whakawhitiwhiti wheako.

Āhea ahau me toro atu ki te tākuta?

Mena kei a koe ngā tohu o te C3G, inā koa ngā panonitanga o tō mimi (he toto, he huka, he iti iho), he pupuhi, he ngenge rawa rānei, me toro atu ki te tākuta tonu. He tohu pea ēnei kāore ō whatukuhu e mahi tika ana.

Mena ka kitea tō mate C3G, ka tukuna koe e tō tākuta ki tētahi tohunga mate tākihi (he tohunga whatukuhu). Māna e hoatu te mahere maimoatanga pai rawa atu ki a koe.

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

Ina kite koe i te tākuta, kaua e mangere ki te pātai i ēnei pātai:

• Me pēhea taku mōhio mēnā kei a au te C3G?
• Mena kāore he C3G i ahau, he aha atu anō ngā mate ka pā mai ki ahau?
• He aha te momo C3G kei a au (DDD, C3GN rānei)?
• He aha ngā maimoatanga e taunaki ana koe māku? He pānga taha kei reira?
• He aha ngā huringa me mahi e au ki taku kai?
• Ki tō whakaaro ka ngoikore aku whatukuhu? Me aha ahau hei ārai i tēnā?
• Ka taea e au te kite i tētahi tohunga roro?

Hei whakamutunga, me kī atu ahau...

He mate onge, he mate uaua hoki te C3G e pā ana ki ngā wae tātari iti i roto i ngā whatukuhu. Mēnā kei a koe te C3G, tera pea ka pāngia koe e ngā huringa i roto i tō mimi, te pupuhi, te mamae o ngā hononga, ngā raruraru tirohanga, me te ngenge.

Tērā pea ka pāngia koe e ngā momo kare ā-roto i a koe e whakaae ana ki tēnei tātaritanga me te urutau ki te pānga o te C3G ki tō oranga. Kaua e manukanuka, ehara i te mea ko koe anake. Hoatu he wā me te wāhi ki a koe anō ki te ako mō te C3G me ō whiringa maimoatanga. Mā te ako mō ō whiringa me ngā mea hei tumanako atu ka āwhina i a koe ki te whakatau i ō kare ā-roto i roto i te huarahi hauora me te whai hua. Kei reira ngā tākuta hei whakarato mōhiohio me te ārahi. Mena he pātai āu, he hiahia tohutohu, he tautoko rānei, kōrero ki a rātou. Kia mahara, mā te tātaritanga wawe me te maimoatanga tika, ka taea e koe te whakahaere i tēnei mate me te noho ora pai.

` C3G, mate tākihi, tāpiringa 3, glomerulopathy, ngoikore o te tākihi, pūmua mimi, dialysis