Mukakhala ndi bala laling'ono pathupi lanu, kapena dzino likakuchotsedwa, kodi magazi amapitirirabe osasiya? Kapena nthawi zina mumakhala ndi mabala abuluu pathupi lanu osagunda kulikonse? Kodi mumawona mabala m'thupi lanu lonse, makamaka mwana wanu akayamba kukwawa kapena kuyenda? Ngati zinthu ngati izi zitachitika, chifukwa chake chingakhale matenda otchedwa hemophilia . Musachite mantha mukamva dzinali. Ndi chithandizo choyenera , mutha kukhala ndi moyo wabwinobwino komanso wodzaza. Tiyeni tikambirane izi momveka bwino komanso mosavuta lero.
Mwachidule, kodi Hemophilia A ndi chiyani?
Mwachidule, Hemophilia A ndi matenda omwe magazi athu sagwira bwino ntchito. Nthawi zambiri, tikavulala, magazi athu amaundana kuti asiye kutuluka magazi. Izi zimathandizidwa ndi mapuloteni apadera m'magazi athu. Timatcha izi "zinthu zoundana."
Munthu amene ali ndi hemophilia A sapanga mokwanira chinthu chotchedwa Factor VIII . Kuopsa kwa matendawa kumatsimikiziridwa ndi kuchuluka kwa mapuloteni a Factor VIII omwe amachepa. Chifukwa chake, amagawidwa m'magawo atatu:
- Hemophilia yofatsa: Miyezo ya Factor VIII ilipo pamlingo winawake.
- Hemophilia yocheperako: Mlingo wa Factor VIII ndi wotsika kwambiri.
- Hemophilia yoopsa: Mlingo wa Factor VIII ndi wotsika kwambiri kapena palibe.
Nthawi zambiri, matendawa ndi matenda a majini omwe amapezeka m'mabanja. Komabe, pafupifupi gawo limodzi mwa magawo atatu a milandu, munthu watsopano amatha kudwala matendawa popanda aliyense m'banjamo kukhala nawo.
Kodi n’chiyani chimayambitsa matenda a hemophilia?
Ichi ndi chinthu chomwe timalandira kudzera m'majini. Taganizirani izi, khalidwe lililonse la thupi lathu limatsimikiziridwa ndi majini. Mkazi ali ndi ma chromosome awiri a X (XX), pomwe mwamuna ali ndi chromosome imodzi ya X ndi chromosome imodzi ya Y (XY).
Vuto la majini lomwe limagwirizanitsidwa ndi hemophilia limapezeka pa chromosome ya X.
Choncho, ngati mayi ali ndi "wonyamula" jini lolakwikali, nthawi zambiri sasonyeza zizindikiro. Chifukwa chromosome yake ina yathanzi ya X imapanga puloteni yofunikira ya factor VIII. Koma ngati mwana wake wamwamuna alandira chromosome ya X yolakwika iyi, mwana ameneyo adzakhala ndi hemophilia. Chifukwa mnyamata ali ndi chromosome imodzi yokha ya X. Pachifukwa ichi, hemophilia imapezeka kwambiri mwa anyamata kuposa atsikana.
Kawirikawiri, akuluakulu azaka zapakati pa 60 ndi 80 amatha kudwala matenda a hemophilia. Matendawa amapezeka pamene chitetezo cha mthupi cha thupi chikulimbana ndi zinthu zabwino zotsekereza magazi. Amathanso kuchitika panthawi ya mimba, khansa , komanso matenda ena odziteteza ku matenda a autoimmune .
Kodi zizindikiro za hemophilia ndi ziti?
Zizindikiro zimadalira ngati vuto lanu ndi lofatsa, lapakati, kapena loopsa.
| Mlingo wa matenda | Zinthu zooneka |
|---|---|
| Hemophilia wofatsa | Kawirikawiri, kutuluka magazi ambiri kumachitika pokhapokha atachitidwa opaleshoni, atachotsa dzino, atabereka, kapena atachita ngozi yaikulu. Anthu ena sadziwa ngakhale kuti ali ndi vutoli mpaka atakula. |
| Hemophilia wochepa | - Akavulala, magazi amatuluka kwambiri. - Nthawi zina kutuluka magazi kumachitika popanda chifukwa. - Thupi limatupa mosavuta ndipo limasintha kukhala labuluu. - Mukalandira katemera, zimatenga nthawi yayitali kuti mutulutse magazi. |
| Kutaya magazi m'thupi kwambiri | Kutuluka magazi nthawi zambiri kumachitika ngakhale popanda kuvulala. Kutuluka magazi kumatha kuchitika makamaka m'malo olumikizirana mafupa ndi minofu . Izi zimapweteka kwambiri. |
Zizindikiro zochenjeza za kutuluka magazi muubongo
Ngati munthu amene ali ndi vuto lalikulu la magazi m'thupi (hemophilia) avulala mutu pang'ono, kutuluka magazi muubongo kungachitike. Izi ndi zoopsa kwambiri. Ngati mwavulala mutu ndipo muli ndi zizindikiro zotsatirazi, imbani dokotala nthawi yomweyo kapena pitani ku dipatimenti yapafupi yothandiza anthu odwala mwadzidzidzi (ETU).
- Mutu wopweteka kwambiri womwe umakhalapo nthawi zonse
- Kusanza
- Kugona tulo kapena kutopa kwambiri
- Kufooka mwadzidzidzi kapena kuvutika kuyenda
- Masomphenya awiri
- Kugwidwa ndi khunyu
Kodi mungazindikire bwanji matendawa?
Ngati wina m'banja mwanu ali ndi vuto la hemophilia, mutha kuyezetsa mwana wanu matendawa muli ndi pakati. Komabe, pali zoopsa zina zomwe zingachitike ndi mayesowa, choncho muyenera kukambirana ndi dokotala wanu.
Matenda oopsa a hemophilia mwa ana aang'ono nthawi zambiri amapezeka mkati mwa chaka choyamba cha moyo. Ngati mwana wanu ayamba kugubuduzika ndikuyamba kukwawa ndipo akuyamba kuona mabala otupa m'thupi mwake, lankhulani ndi dokotala wanu za vutoli.
Dokotala angakufunseni mafunso monga awa:
- Kodi mabala ndi kutuluka magazi kumeneku zinachitika bwanji?
- Kodi magazi atuluka nthawi yayitali bwanji?
- Kodi pali mankhwala aliwonse oti ana amwe?
- Kodi pali aliyense m'banja mwanu amene ali ndi vuto la magazi kuundana?
Kenako, mayeso angapo a magazi adzachitika kuti atsimikizire matendawa. Muthanso kutumizidwa kwa dokotala wa matenda a magazi.
| Dzina la Mayeso | Mukuona chiyani pamenepa? |
|---|---|
| Kuchuluka kwa Magazi Onse (CBC) | Mitundu ya maselo m'magazi ndi kuchuluka kwa hemoglobin zimayesedwa. Izi zingathandize kudziwa ngati pali kuchepa kwa magazi chifukwa cha kutuluka magazi. |
| Mayeso a PT ndi aAPTT | Imayesa nthawi yomwe magazi amaundana. Nthawi zambiri kuchuluka kwa aPTT kumakwera mu hemophilia. |
| Mayeso a Factor VIII ndi Factor IX | Kuchuluka kwa mapuloteni awa m'magazi kumayesedwa. Ngati chinthu VIII chili chochepa, ndiye kuti ndi hemophilia A. |
| Kuyesa Majini | Kusintha kwa majini komwe kumayambitsa matendawa kungathe kuzindikirika. Kwa mkazi, zitha kudziwikanso ngati iye ndi amene ali ndi matendawa. |
Kodi imachiritsidwa bwanji?
Njira yochiritsira imadalira kuopsa kwa matendawa, zaka zanu, ndi zosowa zanu. Cholinga chachikulu cha chithandizochi ndikusintha mapuloteni omwe akusowa m'thupi a factor VIII. Izi zimatchedwa factor replacement therapy . Ngakhale kuti izi sizimachiritsa matendawa kwathunthu, zingathandize kuchepetsa kutuluka kwa magazi ndikukulolani kukhala ndi moyo wabwinobwino.
Pali mitundu iwiri ya chithandizo:
- Chithandizo Choteteza Matenda: Jakisoni wa factor VIII nthawi zonse pa nthawi yake kuti mupewe kutuluka magazi, m'malo moyembekezera kuti magazi atuluke. Izi ndizofunikira kwambiri kwa anthu omwe ali ndi vuto la magazi ambiri.
- Chithandizo cha Pakufunika: Kulandira chithandizo pokhapokha ngati magazi atuluka .
Pali mitundu iwiri ya katemera wa factor VIII:
1. Recombinant Factor VIII: Zinthu zomwe zimapangidwa mu labotale pogwiritsa ntchito genetic engineering. Ichi ndi chomwe chimagwiritsidwa ntchito kwambiri masiku ano.
2. Factor VIII yochokera ku Plasma: Factor yochokera ku plasma ya magazi a munthu.
Anthu omwe ali ndi hemophilia yocheperako mpaka yocheperako A angagwiritsenso ntchito mankhwala otchedwa Desmopressin (DDAVP) . Izi zimagwira ntchito potulutsa chinthu chosungidwa cha VIII m'magazi.
Kuphatikiza apo, mankhwala omwa monga Tranexamic Acid, omwe amaletsa magazi kuundana kuti asasweke, amagwiritsidwanso ntchito pazochitika monga kuchotsa mano.
Chofunika: Popeza munthu amene ali ndi vuto la magazi otaya magazi nthawi zambiri angafunike kupatsidwa magazi pafupipafupi, ndikofunikira kwambiri kulandira katemera wa Hepatitis A ndi B. Funsani dokotala wanu za izi.
Kodi mumasamalira bwanji moyo watsiku ndi tsiku?
Mukakhala ndi matenda a hemophilia, muyenera kuganizira mozama za chitetezo.
- Khalani achangu: Kuchita masewera olimbitsa thupi kumalimbitsa minofu. Minofu yolimba imapereka chitetezo chabwino ku mafupa. Komabe, pewani masewera olimbitsa thupi monga rugby ndi nkhonya. Kusambira, kuyenda, ndi kukwera njinga (ndi chisoti) ndi njira zabwino. Lankhulani ndi dokotala wanu za masewera omwe ndi oyenera kwa inu.
- Tetezani ana: Ngati muli ndi mwana wamng'ono, valani zophimba mawondo, zophimba chigongono, ndi chisoti mukamasewera. Tetezani ku mipando yakuthwa m'nyumba mwanu.
- Thanzi la mano:Sungani ukhondo wabwino wa mano. Tsukani mano anu tsiku lililonse. Izi zingathandize kuchepetsa kufunika kochotsa mano ndi chithandizo chachikulu cha mano. Musanapite kwa dokotala wa mano, onetsetsani kuti mwamuuza kuti muli ndi vuto la hemophilia.
- Mankhwala osayenera kumwa: Mankhwala ochepetsa ululu monga aspirin ndi NSAIDs (monga ibuprofen, diclofenac) amatha kuletsa magazi kuundana. Musamwe mankhwala aliwonse popanda kufunsa dokotala.
Uthenga Wopita Nawo Kunyumba
- Hemophilia A ndi matenda a majini omwe amayamba chifukwa cha kusowa kwa puloteni ya Factor VIII, yomwe imafunika kuti magazi aziundana.
- Izi zimachitika kwambiri mwa anyamata, koma akazi akhoza kukhala ndi matendawa.
- Zizindikiro zazikulu ndi kutuluka magazi ambiri ngakhale chifukwa cha kuvulala pang'ono komanso kuvulala kosafunikira.
- Ngati mutu wanu wavulala ndipo muli ndi zizindikiro monga mutu waukulu, kusanza, kapena kugona, ndi vuto ladzidzidzi. Funsani dokotala nthawi yomweyo.
- Ndi chithandizo choyenera (Factor Replacement Therapy) komanso moyo wabwino, anthu omwe ali ndi hemophilia amatha kukhala ndi moyo wotanganidwa komanso wodzaza ndi zochita.
- Nthawi zonse kambiranani ndi dokotala wanu mankhwala onse omwe mukumwa musanachite opaleshoni kapena chithandizo cha mano.
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