Ungakutholaphi Ukusekelwa kwe-Hereditary Angioedema

-Delile

• Izinhlangano
• Inhlangano yase-US HAE
• Usuku lwe-HAE nokuhamba emhlabeni wonke ngonyaka
• Inhlangano Kazwelonke Yezifo Ezingavamile (NORD) kanye Nosuku Lwezifo Ezingavamile
• Imithombo yezokuxhumana
• Abangane nomndeni
• Ithimba lakho lezempilo
• Ukudla okudlela endlini

Ukubuka konke

I-Hereditary angioedema (HAE) yisimo esingajwayelekile esithinta cishe umuntu oyedwa kwabangu-50 000. Lesi simo esingelapheki sibangela ukuvuvukala emzimbeni wakho futhi singakhomba isikhumba sakho, umgudu wamathumbu, kanye nomgudu womoya ongaphezulu.

Ukuphila nesimo esingajwayelekile kungazizwa unesizungu ngezinye izikhathi, futhi ungazi ukuthi ungasitholaphi iseluleko. Uma wena noma othandekayo uthola ukuxilongwa kwe-HAE, ukuthola ukwesekwa kungenza umehluko omkhulu empilweni yakho yansuku zonke.

Ezinye izinhlangano zixhasa imicimbi yokuqwashisa njengezinkomfa nezindawo ezihleliwe. Ungaxhumana nabanye emakhasini ezinkundla zokuxhumana nakumaforamu aku-inthanethi. Ngaphandle kwalezi zinsiza, ungathola ukuthi ukukhuluma nabantu obathandayo kungakusiza ukuphatha impilo yakho ngalesi simo.

Nazi ezinye izinsiza ongaphendukela kuzo ukuxhaswa kwe-HAE.

Izinhlangano

Izinhlangano ezinikezelwe ku-HAE nezinye izifo ezingavamile zingakugcina uvuselelwa ngokuqhamuka kokwelashwa, zikuxhumanise nabanye abathintekayo yilesi simo, futhi zikusize ukumela labo abaphila nalesi sifo.

Inhlangano yase-US HAE

Enye inhlangano ekhuthaza ukuqwashisa nokukhuthaza i-HAE yi-US HAE Association (HAEA).

Iwebhusayithi yabo iqukethe imininingwane eminingi ngalesi simo, futhi banikela ngobulungu bamahhala. Ubulungu buhlanganisa ukufinyelela kumaqembu okusekela online, ukuxhumana kontanga, kanye nolwazi mayelana nentuthuko yezokwelapha ye-HAE.

Usoseshini uze usingathe ingqungquthela yaminyaka yonke yokuhlanganisa amalungu. Ungaxhumana nabanye ezinkundleni zokuxhumana nge-akhawunti yabo ye-Facebook, Twitter, Instagram, YouTube, ne-LinkedIn.

I-US HAEA iyisandiso se-HAE International. Inhlangano engenzi nzuzo yomhlaba wonke ixhunywe ezinhlanganweni ze-HAE emazweni angama-75.

Usuku lwe-HAE nokuhamba emhlabeni wonke ngonyaka

UMeyi 16 uphawula usuku lokuqwashisa nge-HAE emhlabeni jikelele. I-HAE International ihlela uhambo lwaminyaka yonke lokuqwashisa ngalesi simo. Ungahamba wedwa noma ucele iqembu labangane nomndeni ukuthi ubambe iqhaza.

Bhalisa ku-inthanethi bese ufaka umgomo wokuthi uhlela ukuhamba ibanga elingakanani. Ngemuva kwalokho, hamba isikhathi esithile phakathi kuka-Ephreli 1 noMeyi 31 bese ubika ibanga lakho lokugcina online. Inhlangano igcina isibalo sokuthi zingaki izinyathelo abantu abazihambayo emhlabeni jikelele. Ngo-2019, ababambiqhaza basetha irekhodi futhi bahamba ngaphezu kwezinyathelo eziyizigidi ezingama-90.

Vakashela iwebhusayithi ye-HAE Day ukuze ufunde kabanzi ngalolu suku lokwazisa ngonyaka kanye nohambo lwaminyaka yonke. Ungaxhumana futhi ne-HAE Day ku-Facebook, Twitter, YouTube naku-LinkedIn.

Inhlangano Kazwelonke Yezifo Ezingavamile (NORD) kanye Nosuku Lwezifo Ezingavamile

Izifo ezingandile zichazwa njengezimo ezithinta abantu abangaphansi kwama-200,000. Ungazuza ngokuxhumana nalabo abanezinye izifo ezingavamile njenge-HAE.

Iwebhusayithi ye-NORD ine-database efaka imininingwane yezifo ezingavamile ezingaphezu kwe-1,200. Ungakwazi ukufinyelela esikhungweni semithombo yesiguli nomnakekeli esinamaphepha eqiniso nezinye izinsiza. Futhi, ungajoyina iRareAction Network, ekhuthaza ukufundisa kanye nokukhuthaza ngezifo ezingandile.

Leli sayithi lifaka nemininingwane mayelana nosuku lwezifo ezingavamile. Lolu suku lwaminyaka yonke lokukhuthaza nokwazisa luba ngosuku lokugcina lukaFebhuwari unyaka ngamunye.

Imithombo yezokuxhumana

I-Facebook ingakuxhumanisa namaqembu amaningi anikezelwe ku-HAE. Isibonelo esisodwa yileli qembu, elinamalungu angaphezu kuka-3,000. Iqembu elivaliwe, ngakho ulwazi luhlala ngaphakathi kweqembu labantu abavunyelwe.

Ungaxhumana nabanye ukuxoxa ngezihloko ezinjengezimbangela nezimpawu ze-HAE, nezinhlelo ezahlukahlukene zokwelashwa zalesi simo. Futhi, unganikeza futhi wamukele amathiphu ekuphatheni izici zempilo yakho yansuku zonke.

Abangane nomndeni

Ngaphandle kwe-inthanethi, abangani bakho nomndeni wakho bangakunika ukusekelwa njengoba uzulazula empilweni nge-HAE. Abathandekayo bakho bangakuqinisekisa, bakuthethelele ukuthi uthole izinhlobo ezifanele zokusekelwa, futhi ube yindlebe elalelayo.

Ungaqondisa abangani nomndeni abafuna ukukuxhasa ezinhlanganweni ezifanayo ozivakashelayo ukuze ufunde kabanzi ngalesi simo. Ukufundisa abangani nomndeni ngalesi simo kuzobavumela ukuthi bakusekele kangcono.

Ithimba lakho lezempilo

Ngaphezu kokusiza ukuxilonga nokwelapha i-HAE yakho, iqembu lakho lezokunakekelwa kwempilo lingakunikeza ngamathiphu okuphatha isimo sakho. Noma ngabe unenkinga yokugwema izimbangela noma uhlangabezana nezimpawu zokukhathazeka noma zokudangala, ungaya kuthimba lakho lezokunakekelwa kwezempilo ngemibuzo yakho. Bangakunika izeluleko futhi bakudlulisele kwabanye odokotela uma kunesidingo.

Ukudla okudlela endlini

Ukufinyelela kwabanye nokufunda kabanzi nge-HAE kuzokusiza uzulazule kulesi simo sempilo yakho yonke. Kunezinhlangano eziningana nezinsizakusebenza eziku-inthanethi ezigxile ku-HAE. Lokhu kuzokusiza ukuxhumana nabanye abaphila ne-HAE futhi kunikeze izinsiza zokukusiza ukufundisa abanye abaseduze kwakho.