Kodi mukudziwa za Alport Syndrome? Tiyeni tikambirane za iyo!

Kodi munayamba mwazindikirapo kuti muli magazi pang'ono mu mkodzo wanu? Kapena nthawi zina mumamva ngati kumva kwanu kuli kotsika pang'ono, kapena kuona kwanu kuli kosiyana pang'ono? Izi ndi zinthu zomwe nthawi zina sitimaziganizira kwambiri pa moyo wathu watsiku ndi tsiku. Komabe, nthawi zina kumbuyo kwa zizindikiro zazing'onozi pakhoza kukhala vuto lomwe likufunika chisamaliro, monga Alport Syndrome . Kotero lero tikambirana izi m'njira yosavuta yomwe mungamvetse.

Kodi Alport Syndrome ndi chiyani?

Mwachidule, Alport syndrome ndi matenda a majini omwe impso zanu sizingathe kupanga mapuloteni a collagen a mtundu wachinayi mwachizolowezi.

Taganizirani izi, "Kolajeni ya Mtundu Wachinayi" iyi imapangidwa ndi maunyolo atatu a collagen (maunyolo a alpha) opindika pamodzi ngati chingwe. Maunyolo awa amatchedwa alpha 3, alpha 4, ndi alpha 5. Tsopano, ngati thupi lanu silipanga maunyolo aliwonse awa, ena awiri sangagwirizane. Pamenepo ndi pomwe zizindikiro zoopsa kwambiri za Alport syndrome zimachitika.

Nthawi zina, maunyolo onsewa amapangidwa m'thupi lanu, koma ngati umodzi mwa iwo sunapangidwe bwino, nthawi zina maunyolowo sungagwirizane, kapena ngakhale atagwirizana, sagwira ntchito bwino. Pazochitikazi, zizindikiro zimatha kuchepa pang'ono.

Puloteni iyi, yotchedwa ``Type IV collagen'', ndi yofunika kwambiri pa kusefa ma nembanemba mu impso zanu, ``glomerular basement membranes kapena GBM''. ``(GBM)'' iyi ndiyo imasefa magazi anu, kulekanitsa poizoni ndi zinthu zina zomwe thupi silifunikira ndikuthandizira kupanga mkodzo. Imathandizanso kusunga zinthu monga maselo amagazi ndi mapuloteni m'magazi m'malo mopita mumkodzo.

Tsopano, pamene `(GBM)` iyi sikugwira ntchito bwino, magazi kapena mapuloteni amatha kutuluka mu mkodzo wanu. Pakapita nthawi, mphamvu ya impso zanu yosefa mkodzo imachepanso. Izi zimawonjezera chiopsezo cha impso kulephera kugwira ntchito.

Koma izi sizimangokhudza impso zokha. "Kolajeni wa Mtundu wa IV" uyu amapezekanso m'makutu ndi m'maso mwanu. Chifukwa chake, kuwonjezera pa mavuto a impso, munthu amene ali ndi vuto la Alport syndrome akhozanso kukhala ndi vuto la kuwona ndi kumva.

Kodi tingalandire bwanji izi?

Pali mitundu itatu ikuluikulu ya majini ya Alport syndrome. Tiyeni tiwone zomwe zili.

Matenda a Alport olumikizidwa ndi X (XLAS)

Izi zikugwirizana ndi chromosome yanu ya X. Chromosome ya X ndi imodzi mwa ma chromosome anu awiri ogonana (X ndi Y). Ili ndi jini yomwe imapanga unyolo wa alpha 5 `(COL4A5)`.

Tsopano, onani, mwamuna ali ndi chromosome imodzi ya X ndi chromosome imodzi ya Y. Mkazi ali ndi ma chromosome awiri a X. Popeza amuna ali ndi chromosome imodzi yokha ya X yolakwika, amakhala ndi zizindikiro zoopsa kwambiri. Popeza akazi ali ndi chromosome imodzi ya X yolakwika ndi chromosome imodzi yathanzi ya X, zizindikiro zawo nthawi zambiri zimakhala zochepa.

Mwamuna amapereka chromosome yake ya Y kwa ana ake aamuna. Chifukwa chake, sangathe kupereka `(XLAS)` kwa ana awo aamuna. Komabe, mwamuna amapereka chromosome yake ya X kwa ana ake aakazi onse. Chifukwa chake, ana ake aakazi onse amatha kukhala ndi Alport syndrome.

Mayi amapereka imodzi mwa ma chromosome ake awiri a X kwa mwana wake, mosasamala kanthu kuti mwanayo ndi mnyamata kapena mtsikana. Chifukwa chake, ali ndi mwayi wa 50% wopatsira `(XLAS)` kwa mwana aliyense.

`(XLAS)` iyi ndiyo mtundu wofala kwambiri wa Alport syndrome. Pakati pa 60% ndi 80% ya odwala onse a Alport syndrome ali m'gulu la matendawa.

Matenda a Autosomal recessive Alport (ARAS)

"Autosomal" amatanthauza majenereti 23 a autosomal. "Autosomal recessive" amatanthauza njira yopezera cholowa. Ngati kholo limodzi lili ndi khalidwe la autosomal recessive, silidzawonetsa zizindikiro. Kuti liperekedwe kwa ana awo, makolo onse awiri ayenera kukhala ndi khalidweli. Komabe, chifukwa alibe zizindikiro, sadziwa ngakhale pang'ono kuti ali nalo.

Mu matenda a Alport, majini omwe amalemba mapuloteni a alpha 3 (COL4A3) ndi alpha 4 (COL4A4) amapezeka pa chromosome 2. "Recessive" amatanthauza kuti kusintha kwa majini onse awiri a majini kumafunika kuti matendawa achitike.

Kotero, mu `(ARAS)`, pali kusintha kwa majini omwe amalemba mapuloteni a alpha 3 kapena alpha 4 pa chromosome 2. `(ARAS)` sikudalira jenda, kotero cholowa ndi kuopsa kwa zizindikiro ndi chimodzimodzi kwa aliyense.

Ngati muli ndi `(ARAS)`, ana anu ali ndi mwayi wa 50% wopatsira majini olakwika awa. Izi nthawi zambiri sizimayambitsa Alport syndrome. Komabe, pali mwayi wa 25% wopatsira majini onse awiri olakwika kwa ana anu. Ngati izi zitachitika, mwana wanu adzakhala ndi `(ARAS)`.

(ARAS) ndi omwe amawerengera pafupifupi 15% ya odwala matenda a Alport.

Matenda a Autosomal dominant Alport (ADAS)

"Dominant" amatanthauza kuti matenda angayambitsidwe ndi kusintha kwa majini m'majini awiri okha. Mu ADAS, pali kusintha kwa majini m'modzi mwa majini omwe amalemba puloteni COL4A3 kapena COL4A4 pa chromosome 2.

ADAS siidalira jenda, kotero cholowa ndi kuopsa kwa zizindikiro n'zofanana kwa aliyense.

Ngati muli ndi ADAS, pali mwayi wa 50% kuti ana anu apatsire jini lolakwikali ndikukula ADAS.

(ADAS) ndi omwe ali pakati pa 25% ndi 35% ya odwala matenda a Alport.

Kodi izi zimakhudza ndani? Kodi ndizofala bwanji?

Matenda a Alport angakhudze aliyense. Ndi matenda obadwa nawo, zomwe zikutanthauza kuti kholo limodzi kapena onse awiri amapatsira mwana wawo. Komabe, pafupifupi 15% ya milandu, amatha kufalikira ngakhale makolo onse awiri alibe majini osinthika.

Madokotala amaganiza kuti Alport syndrome ndi vuto losowa kwambiri.Ofufuza akuti anthu osakwana 200,000 ku United States ali ndi matendawa. Padziko lonse lapansi, kufalikira kwa matendawa ndi pafupifupi munthu m'modzi mwa ana 50,000 obadwa amoyo. Komabe, pamene ofufuza akupitiriza kuphunzira izi, akupeza anthu omwe ali ndi zizindikiro zochepa. Chifukwa chake matenda a Alport akhoza kukhala ofala kwambiri kuposa momwe akudziwikira pano.

Kodi matenda a Alport amayambitsa bwanji kulephera kwa impso?

Ngati muli ndi Alport syndrome, ma glomerular basement membranes omwe ndatchula kale sakusefa bwino. Choncho magazi ndi mapuloteni amatuluka mu mkodzo. Sikuti zokhazo, komanso maselo omwe ali mbali zonse ziwiri za ma membraneswo samalandira chithandizo choyenera. Kenako maselo amenewo amakwiya ndi kutupa . Maselo amenewa otchedwa podocytes amapanga GBM. Maselo ozungulira akatupa, ma podocyteswa amayesa kuyika collagen yamtundu wa IV yambiri mu GBM. Izi zikachitika, GBM imakhuthala ndipo imakhala yosakhazikika. Izi ndi zomwe zimapangitsa kuti mapuloteni atuluke mu mkodzo (proteinuria).

Pakapita nthawi, pamene mapuloteni ambiri akulowa mu mkodzo, GBM imakhuthala, ndipo minofu ya zipsera (fibrosis) imatha kupangika. Zotsatira zake, impso zanu zimayamba kutaya mphamvu zawo zoyeretsa magazi anu. Izi zimatchedwa matenda a impso osatha (CKD). Pamene minofu ya zipsera zambiri ikuwonjezeka, ntchito ya impso imayipa kwambiri, ndipo pamapeto pake impso zimasiya kugwira ntchito (kulephera kwa impso).

Kodi zizindikiro zazikulu za Alport syndrome ndi ziti?

Zizindikiro zimatha kusiyana kutengera mtundu wa matenda omwe muli nawo. Zizindikiro zazikulu ndi izi:

• Magazi mu mkodzo omwe simungawaone (microscopic hematuria).
• Kupezeka kwa mapuloteni mu mkodzo (proteinuria).
• Matenda a impso osatha (CKD) kapena kulephera kwa impso.
• Kutaya kumva.
• Mavuto a maso.

Chizindikiro choyamba cha Alport syndrome ndi microscopic hematuria. Izi zikutanthauza kuti GBM yanu yolakwika ikupangitsa kuti maselo ofiira a magazi atuluke mumkodzo wanu. Izi sizikuwoneka ndi maso, koma zitha kuwoneka pokhapokha mutagwiritsa ntchito microscope. Amuna omwe ali ndi XLAS ndi aliyense amene ali ndi ARAS akhoza kukhala ndi microscopic hematuria kuyambira kubadwa. Akazi ambiri omwe ali ndi XLAS amakhala ndi microscopic hematuria pakapita nthawi. Si aliyense amene ali ndi ADAS amakhala ndi microscopic hematuria.

Matenda a impso osatha (CKD) amayamba pamene ntchito ya impso yayamba kuchepa. Anthu ambiri sasonyeza zizindikiro za CKD mpaka impso zawo zitasiya kugwira ntchito bwino.

Zizindikiro za kulephera kwa impso:

• Kutupa (edema), makamaka kuzungulira manja kapena akakolo.
• Kutopa kwambiri.
• Kusanza ndi kusanza.
• Kupweteka kwa minofu.

Kutaya kumva kumachitika kwambiri mwa amuna omwe ali ndi XLAS ndi ARAS. Koma zimatha kuchitika kwa aliyense amene ali ndi Alport syndrome. Kutaya kumva kumachitika pang'onopang'ono. Anthu ambiri sazindikira mpaka zitachedwa. Anthu ambiri amavutika kumva mawu okwera, ndipo ena amatha kutaya kumva konse. Pamapeto pake mungafunike kugwiritsa ntchito zothandizira kumva. Pa milandu yoopsa, mutha kutaya kumva kwathunthu (kugontha).

Palinso mavuto osiyanasiyana m'maso. Anthu ena amakhala ndi mikwingwirima m'maso, zomwe zimatenga nthawi yayitali kuti zichiritsidwe. Izi zingayambitse maso otuluka madzi komanso kupweteka, koma nthawi zambiri sizimayambitsa kutayika kwa masomphenya. Anthu ena amakhala ndi vuto ndi gawo loyera la diso, lenzi, lomwe limathandiza kuyang'ana masomphenya, ndipo pamapeto pake limatha kukhala ndi matenda a maso.

Ngati muli ndi Alport syndrome ndipo muli ndi vuto la kumva kapena kuona, pitani kwa dokotala nthawi yomweyo.

Kodi n’chiyani chimayambitsa matenda a Alport?

Mwachidule, izi zimachitika chifukwa cha kusintha kwa majini anu a collagen.

Kodi izi ndi zopatsirana?

Ayi, matenda a Alport si matenda opatsirana. Safalikira kuchokera kwa munthu mmodzi kupita kwa wina kudzera mu kukhudzana kwambiri. Ndi matenda obadwa nawo.

Kodi mumazindikira bwanji izi?

Ngati muli ndi microscopic hematuria kapena matenda osatha a impso, dokotala angaganize kuti muli ndi Alport syndrome. Ngati wina m'banja mwanu ali ndi Alport syndrome, mayeso amatha kuzindikira. Ngati palibe m'banja mwanu amene ali ndi vutoli, dokotala akhoza kukudziwani malinga ndi mbiri yanu yachipatala komanso mayeso ena.

Dokotala adzafufuza zizindikiro zanu ndikufunsani za mbiri ya matenda a m'banja mwanu. Mayeso osiyanasiyana angathandizenso kuzindikira izi. Mayesowa akuphatikizapo:

• Kusanthula mkodzo: Izi zimayesa mawonekedwe, kapangidwe kake, ndi mawonekedwe a mkodzo wanu osawoneka bwino. Zimatha kuzindikira ngati muli magazi kapena mapuloteni mu mkodzo.
• Kuyesa kwa Creatinine clearance kapena kuyesa magazi kwa cystatin C: Kuyesa kumeneku kumayesa kuchuluka kwa creatinine ndi cystatin C, zomwe ndi zinyalala, m'magazi mwanu. Izi zitha kusonyeza momwe impso zanu zikusefera magazi anu.
• Chiŵerengero Choyerekeza cha Kusefa kwa Glomerular (eGFR): Ichi ndi chiwerengero chomwe dokotala amawerengera kuchokera ku creatinine kapena cystatin C. Chimawerengera momwe impso zanu zikutsukira magazi anu.
• Kufufuza impso: Dokotala amatenga zidutswa zazing'ono kwambiri za minofu ya impso yanu ndikuziyang'ana pansi pa maikulosikopu mu labu. Zitsanzozi zikuwonetsa mitundu yosiyanasiyana yomwe ikukhudza impso zanu. Mu matenda a Alport, ma GBM olakwika amawoneka opyapyala, koma pakhoza kukhalanso madera okhuthala. Ngati matendawa ndi oopsa, amatha kuwonetsa zipsera m'mayunitsi osefera ndi ziwalo zothandizira.
• Kuyezetsa majini: Izi zitha kuzindikira kusintha kwa majini anu a collagen. Izi zidzafunika kupita ku chipatala chapadera cha majini. Dokotala adzachita izi poyezetsa magazi kapena malovu.
• Kuyeza kumva (audiogram): Ngati dokotala akukayikira kuti Alport syndrome ndi yoopsa, akhoza kuyitanitsa mayeso a kumva. Aliyense amene ali ndi Alport syndrome ayenera kuyesedwa. Kuyeza kumeneku kuyenera kuchitika zaka zingapo zilizonse kuti aone ngati vuto la kumva likuchepa kapena likuipiraipira.
• Kuyezetsa maso: Kuyezetsa kumeneku kuyenera kuchitidwa ndi katswiri wa maso yemwe ndi katswiri wodziwa bwino matenda a maso. Adzayang'ana maso anu ndikuyang'ana pamwamba pa diso lanu (cornea), lenzi, ndi kumbuyo kwa diso lanu (retina) kuti aone ngati Alport syndrome yakhudza maso anu. Angathenso kuchita mayeso ojambulira zithunzi otchedwa optical coherence tomography (OCT).

Kodi matenda a Alport angachiritsidwe? Kodi mankhwala ake ndi otani?

Palibe mankhwala a Alport syndrome. Ofufuza akugwira ntchito yokonza majini omwe ali ndi vuto, koma sanapambanebe. Ngakhale chithandizo cha majini chikapangidwa bwino, padzatenga zaka zambiri tisanachipeze. Komabe, pali mankhwala omwe angachedwetse kuchepa kwa ntchito ya impso ndikuchedwetsa kulephera kwa impso.

Dokotala akhoza kulemba zinthu monga:

• Mankhwala oletsa angiotensin-converting enzyme (ACE): Mankhwalawa amachepetsa kuthamanga kwa magazi, amachepetsa mapuloteni mumkodzo wanu, komanso amathandiza kuteteza impso zanu. Amuna omwe ali ndi (XLAS) ndi aliyense amene ali ndi (ARAS) ayenera kuyamba kumwa mankhwala oletsa ACE atapezeka ndi matendawa. Azimayi omwe ali ndi (XLAS) kapena (ADAS) ayenera kuyamba kumwa mankhwala oletsa ACE akangoyamba kuona mapuloteni mumkodzo wawo, kapena panthawi yopezeka ndi matendawa.
• Angiotensin II receptor blockers (ARBs): Ma ARB ndi ofanana ndi ACE inhibitors ndipo ali ndi ubwino womwewo.
• Zoletsa za mtundu wachiwiri (SGLT-2) zonyamula sodium-glucose: Ngati muli ndi matenda a CKD kapena Alport, zoletsa za SGLT-2 zingathandize kuchepetsa chiopsezo chanu cha kulephera kwa impso. Dokotala wanu angawonjezere izi ku ACE inhibitor yanu kapena ARB. Si zoletsa zonse za SGLT-2 zomwe zavomerezedwa kuchiza CKD. Dokotala wanu sangakupatseni izi ngati eGFR yanu ili yochepa kwambiri.
• Zakudya zolamulidwa ndi sodium: Kuchepetsa kuchuluka kwa mchere ndi sodium muzakudya zanu kungathandize kuchepetsa kuthamanga kwa magazi ndikusunga thanzi la impso ndi mtima.

Kodi kuyika impso mu impso kungathandize matenda a Alport?

Inde ndi ayi. Mukayika impso mu impso ina, mumapeza impso yokhala ndi ``Type IV collagen'' yabwinobwino komanso ma filtration membranes. Chifukwa chake, Alport syndrome sidzabwerera mu impso yatsopano.

Komabe, kusamutsa impso sikungathandize ndi zizindikiro zina, monga kutaya kumva ndi mavuto a maso.

Kodi tingapewe bwanji izi?

Matenda a Alport sangapewedwe. Komabe, kudziwa mbiri ya banja lanu kungakuthandizeni kuzindikira msanga. Kungakuthandizeninso kupewa kufalitsa matenda kwa ana anu.

Kuzindikira msanga matenda a Alport ndi kuyamba kulandira chithandizo ndi ACE inhibitors/ARBs ndi SGLT-2 inhibitors ndiyo njira yabwino kwambiri yochedwetsera kulephera kwa impso.

Ngati dokotala wanena kuti muli ndi magazi mu mkodzo wanu, ndi bwino kupita kukayezetsanso matenda a Alport syndrome, makamaka ngati muli ndi vuto la kumva kapena impso zanu sizikugwira ntchito bwino.

Ngati wina m'banja mwanu ali ndi mbiri ya magazi mu mkodzo (hematuria), dokotala ayenera kufufuza magazi mu mkodzo wanu ndikuyesa magazi kuti aone momwe impso zanu zimagwirira ntchito.

Kodi moyo wanga udzakhala bwanji ndikakhala ndi Alport syndrome?

Amuna omwe ali ndi `(XLAS)` ndi aliyense amene ali ndi `(ARAS)` nthawi zambiri amakhala ndi vuto la impso komanso kumva asanakwanitse zaka 30.

Azimayi omwe ali ndi XLAS nthawi zambiri amakhala ndi moyo wabwinobwino. Mutha kukhala ndi microscopic hematuria, proteinuria, CKD, kapena impso kulephera komanso kumva kutayika. Aliyense amayankha mosiyana. Koma 16% ya akazi adzakhala ndi impso kulephera akamafika zaka 60, ndipo 20% adzakhala ndi impso akamafika zaka 80.

Anthu omwe ali ndi `(ADAS)` amatha kukhala ndi mayankho osiyanasiyana, ndipo amatha kukhala ndi moyo wabwinobwino. Kutaya kumva ndi kulephera kwa impso sizimachitika kawirikawiri mu `(ADAS)`.

Matenda a impso osatha (CKD) ndi kulephera kwa impso nthawi zambiri zimafupikitsa moyo wa anthu omwe ali ndi matenda a Alport. CKD imawonjezera chiopsezo cha imfa chifukwa cha matenda a mtima ndi sitiroko. Kulephera kwa impso kumapha popanda dialysis kapena kuikidwa impso. Ngakhale mutalandira chithandizo, kulephera kwa impso kumawonjezera chiopsezo cha imfa chifukwa cha matenda a mtima, sitiroko, ndi matenda. Kutengera momwe impso yoikidwa imagwirira ntchito bwino, kuikidwa impso kungakuthandizeni kukhala ndi moyo wabwinobwino.

Kodi ndimadzisamalira bwanji?

Ngati muli ndi Alport syndrome, dokotala adzakuthandizani kupanga njira yabwino kwambiri yothandizira. Izi zingaphatikizepo mankhwala ndi kusintha moyo wanu.

Chithandizo chamankhwala

• Imwani mankhwala oletsa ACE, ARB, kapena SGLT-2 monga momwe dokotala wanu wanenera.
• Pewani kumwa mankhwala ochepetsa ululu (mankhwala oletsa kutupa omwe si a steroidal - NSAIDs). Mankhwalawa angathandize kuti impso zisamagwire bwino ntchito ngati muli ndi vuto la impso kapena matenda a Alport.
• Yang'anani kumva kwanu.Ngati muli ndi vuto lalikulu la kumva ndipo dokotala wanu akulangizani kuti mugwiritse ntchito zida zothandizira kumva, ndi bwino kuzigwiritsa ntchito. Kupanda kutero, zingakuvuteni kulankhulana ndi ena, zomwe zingakupangitseni kumva kuti ndinu nokha komanso nokha. Maganizo amenewa a kudzipatula angayambitse kuvutika maganizo. Zida zothandizira kumva zingakuthandizeni kukhala bwino ndi anthu omwe ali pafupi nanu, kusintha momwe mukumvera, komanso kukuthandizani kuthana ndi kuvutika maganizo.
• Samalirani thanzi lanu la maganizo. Kukhala ndi vuto la majini kungakhale kusungulumwa, ndipo kudziwa kuti Alport syndrome ingayambitse kulephera kwa impso kapena kulephera kumva kungakulitse chiopsezo chanu cha kuvutika maganizo. Ndikofunikira kulankhula ndi dokotala wanu za mavuto aliwonse amisala omwe muli nawo ndikupeza chithandizo chomwe mukufuna. Funsani dokotala wanu ngati pali magulu othandizira anthu omwe ali ndi Alport syndrome. Kukumana ndi anthu otere kungakuthandizeni kuti musamadzimve kuti ndinu nokha.

Kusintha kwa moyo

• Chepetsani kuchuluka kwa mchere m'chakudya chanu.
• Ngati muli ndi matenda a CKD, mungafunike kutsatira zakudya zapadera. Izi zingaphatikizepo kuchepetsa kudya mapuloteni ochokera ku nyama, kusintha kudya zakudya zochokera ku zomera, kupewa zakudya zokhala ndi potaziyamu wambiri ngati muli ndi potaziyamu wambiri m'magazi, komanso kuchepetsa kudya mapuloteni ngati muli ndi phosphorous yambiri m'magazi kapena parathyroid hormone (PTH).
• Kutsatira moyo wathanzi wa mtima kungakuthandizeni kuchepetsa chiopsezo cha matenda a mtima, matenda a shuga, ndi matenda ena omwe angayambitse kulephera kwa impso. Kuchita masewera olimbitsa thupi monga kuyenda mwachangu, kuthamanga, kusambira, kukwera njinga, ndi kulumpha chingwe ndikwabwino. Ndikwabwinonso kukhala ndi kulemera kwathanzi komwe kuli koyenera kwa inu.
• Pewani kusuta fodya ndi zinthu zina zosuta fodya. Pitani kwa dokotala ngati mukufuna thandizo kuti musiye kusuta fodya.

Kodi ndiyenera kupita kwa dokotala liti?

Kaonaneni ndi dokotala ngati muli ndi magazi mu mkodzo wanu, kumva kwanu kutayika, kapena kuona kwanu kutayika. Izi zitha kukhala zizindikiro za matenda a Alport.

Ngati muli ndi Alport syndrome, onetsetsani kuti dokotala wanu akutumizani kwa katswiri wa impso (nephrologist).

Ngati wina m'banja mwanu ali ndi Alport syndrome, pitani kwa dokotala kuti akaone ngati inunso muli nayo.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala wanga?

Ngati mukuganiza kuti mwina muli ndi Alport syndrome, kapena ngati wina m'banja mwanu ali ndi Alport syndrome, funsani dokotala mafunso awa:

• Kodi mukudziwa momwe mungazindikire Alport syndrome?
• Kodi munganditumizire kwa katswiri wodziwa momwe angadziwire matenda a Alport?
• Kodi pali magazi mu mkodzo wanga?
• Kodi ntchito ya impso yanga ikuchepa?
• Kodi ndiyenera kuyezedwa kumva kapena maso?
• Kodi ndiyenera kuchitidwa biopsy ya impso?
• Kodi ndiyenera kukayezetsa majini?

Ngati muli ndi Alport syndrome, funsani dokotala mafunso awa:

• Kodi mukudziwa bwanji kuti ndili ndi Alport syndrome?
• Kodi ndi liti pamene ndingatumizidwe kwa katswiri wa impso (nephrologist) amene amadziwa za Alport syndrome?
• Kodi ndili ndi matenda amtundu wanji a Alport?
• Kodi ndipereka matenda a Alport kwa ana anga?
• Kodi `(GFR)` yanga ndi chiyani?
• Kodi mu mkodzo wanga muli mapuloteni angati?
• Kodi mumayamba liti kugwiritsa ntchito `(ACE inhibitor)` kapena `(ARB)`?
• Kodi ndipindula ndi mankhwala oletsa SGLT-2?
• Ndi mankhwala ena ati omwe mumalimbikitsa?
• Kodi ndiyenera kukonza nthawi yokumana ndi dokotala kuti ndione ngati impso zanga zili bwino?
• Kodi ndiyenera kuyezetsa kangati kumva kwanga?
• Kodi ndiyenera kupita kwa dokotala wa maso kuti akaone maso anga?
• Kodi mungalimbikitse magulu othandizira anthu omwe ali ndi Alport syndrome?

Matenda a Alport ndi matenda omwe amawononga mitsempha yamagazi mu impso zanu. Kusintha kwa majini anu kumakhudza momwe impso zanu zimagwirira ntchito, komanso kungakhudze kumva kwanu ndi maso anu.

Mungakumane ndi malingaliro osiyanasiyana pamene mukuvomereza matendawa komanso momwe Alport syndrome imakhudzira moyo wanu. Ndikofunikira kudzipatsa nthawi ndi malo kuti mumvetse matenda anu komanso njira zochiritsira. Kudziwa njira zomwe mungasankhe komanso zomwe mungayembekezere kungakuthandizeni kuthana ndi malingaliro anu. Inu ndi amene mumapanga zisankho zomaliza zokhudza thanzi lanu, ndipo dokotala wanu alipo kuti akupatseni chidziwitso ndi chitsogozo. Ngati muli ndi mafunso aliwonse, mukufuna thandizo, kapena mukufuna upangiri, lankhulani nawo.

Uthenga wofunika kwambiri woti upite nawo kunyumba

Ngakhale kuti Alport syndrome ndi matenda oopsa komanso obadwa nawo kwa moyo wonse, kuwazindikira msanga ndi kuwasamalira bwino kungathandize anthu kukhala ndi moyo wabwinobwino.

Ngati wina m'banja mwanu ali ndi zizindikiro izi (makamaka magazi mu mkodzo, kumva kutayika), kapena ngati mukuziona nokha, sikuchedwa kufunafuna upangiri wa dokotala. Ndi mayeso ndi chithandizo choyenera, mutha kuchepetsa kuwonongeka kwa impso ndikusunga moyo wanu wabwino. Kumbukirani, simuli nokha, ndipo madokotala ndi okondedwa anu alipo kuti akuthandizeni.

Matenda a Alport , matenda a impso, matenda a majini, kolajeni, magazi mu mkodzo, kutaya kumva, matenda a maso