Ungayifumana phi inkxaso kwi-Angioedema yelifa

Umxholo

• Imibutho
• Umbutho wase-US HAE
• Usuku lwe-HAE kunye nohambo lwehlabathi lonyaka
• Umbutho weSizwe wezifo ezinqabileyo (NORD) kunye nosuku lweZifo eziNqabileyo
• Imidiya yokuncokola
• Abahlobo kunye nosapho
• Iqela lakho lokhathalelo lwempilo
• Yise kude

Ushwankathelo

I-Hereditary angioedema (HAE) yimeko enqabileyo echaphazela malunga ne-1 kubantu abangama-50 000. Le meko ingapheliyo ibangela ukudumba emzimbeni wakho kwaye inokujolisa kulusu lwakho, ithumbu lesisu, kunye nendlela ephezulu yomoya.

Ukuphila nemeko enqabileyo unokuziva ulilolo ngamanye amaxesha, kwaye usenokungazi ukuba ungalifumana phi ingcebiso. Ukuba wena okanye umntu omthandayo ufumana uxilongo lwe-HAE, ukufumana inkxaso kunokwenza umahluko omkhulu kubomi bakho bemihla ngemihla.

Eminye imibutho ixhasa iminyhadala yokwazisa enjengeenkomfa kunye neendlela ezilungiselelwe ukuhamba. Unokudibanisa nabanye kumaphepha eendaba ezentlalo nakwiiforamu ezikwi-Intanethi. Ngaphandle kwezi zixhobo, unokufumanisa ukuba ukuthetha nabantu obathandayo kunokukunceda ulawule ubomi bakho ngale meko.

Nazi izixhobo onokujika kuzo uxhase inkxaso ye-HAE.

Imibutho

Imibutho ezinikele kwi-HAE kunye nezinye izifo ezinqabileyo zinokukugcina uhlaziyiwe kunyango, zinxibelelane nabanye abachaphazeleka yile meko, kwaye zikuncede ukubakhuthaza abo baphila nale meko.

Umbutho wase-US HAE

Omnye umbutho okhuthaza ulwazi nokwazisa nge-HAE ngumbutho wase-US HAE (HAEA).

Iwebhusayithi yabo iqulethe ubutyebi bolwazi malunga nemeko, kwaye banikezela ngobulungu basimahla. Ubulungu buquka ukufikelela kumaqela enkxaso kwi-Intanethi, unxibelelwano koontanga, kunye nolwazi malunga nophuhliso lwezonyango lwe-HAE.

Umbutho ude ubambe nenkomfa yonyaka yokudibanisa amalungu. Unokudibanisa nabanye kumajelo asekuhlaleni nge-Facebook, i-Twitter, i-Instagram, i-YouTube kunye ne-akhawunti ye-LinkedIn.

I-US HAEA lulwandiso lwe-HAE yamanye amazwe. Umbutho ongajonganga kwenza nzuzo uqhagamshelwe kwimibutho ye-HAE kumazwe angama-75.

Usuku lwe-HAE kunye nohambo lwehlabathi lonyaka

Ngomhla we-16 kuMeyi amanqaku oSuku lokuQaphela lwe-HAE kwihlabathi liphela. I-HAE yamazwe aphesheya iququzelela uhambo lonyaka lokwazisa abantu ngale meko. Unokuhamba wedwa okanye ucele iqela labahlobo kunye nosapho ukuba luthathe inxaxheba.

Bhalisa kwi-Intanethi kwaye ufake injongo yokuba uceba ukuhamba umgama omde kangakanani. Emva koko, hamba ngamanye amaxesha phakathi kuka-Epreli 1 noMeyi 31 kwaye uxele umgama wakho wokugqibela kwi-intanethi. Umbutho ugcina inani lamanyathelo abantu abahamba kuwo kwihlabathi liphela. Ngo-2019, abathathi-nxaxheba baseta irekhodi kwaye bahamba ngaphezulu kwamanyathelo angama-90 ezigidi.

Ndwendwela iwebhusayithi yoSuku lwe-HAE ukuze ufunde ngakumbi ngolu suku lwenkxaso yonyaka kunye nokuhamba konyaka. Unokudibanisa ne-HAE Day kwi-Facebook, kwi-Twitter, kwi-YouTube nakwi-LinkedIn.

Umbutho weSizwe wezifo ezinqabileyo (NORD) kunye nosuku lweZifo eziNqabileyo

Izifo ezinqabileyo zichazwa njengeemeko ezichaphazela abantu abangaphantsi kwama-200,000. Unokuxhamla ngokunxibelelana nabo banezinye izifo ezinqabileyo ezinje nge-HAE.

Iwebhusayithi ye-NORD inedatha ebandakanya ulwazi kwizifo ezinqabileyo ezingaphezu kwe-1,200. Unokufikelela kwiziko lezixhobo zesigulana nomongi elinamaphepha enyaniso kunye nezinye izixhobo. Kwakhona unokujoyina i-RareAction Network, ekhuthaza imfundo kunye nokukhuthaza malunga nezifo ezinqabileyo.

Le ndawo ikwabandakanya ulwazi malunga noMhla weSifo seRare. Olu suku lwenkxaso nolwazisa lonyaka luba ngomhla wokugqibela kuFebruwari kunyaka ngamnye.

Imidiya yokuncokola

I-Facebook inokukuqhagamshela kumaqela aliqela azinikele kwi-HAE. Omnye umzekelo leli qela, elinamalungu angaphezu kwama-3,000. Liqela elivaliweyo, ke ulwazi luhlala ngaphakathi kweqela labantu abavunyiweyo.

Unokunxibelelana nabanye ukuxoxa ngezihloko ezinje ngee-HAE kunye neempawu, kunye nezicwangciso zonyango ezahlukeneyo zale meko. Kwaye, unokunika kwaye ufumane iingcebiso kulawulo lwemiba yobomi bakho bemihla ngemihla.

Abahlobo kunye nosapho

Ngaphandle kwe-intanethi, abahlobo bakho kunye nosapho banokubonelela ngenkxaso njengoko ujikeleza ubomi nge-HAE. Abantu obathandayo banokukuqinisekisa, bakukhuthaze ukuba ufumane iintlobo zenkxaso ezifanelekileyo, kwaye ube yindlebe emameleyo.

Ungayalela abahlobo kunye nosapho abafuna ukukuxhasa kule mibutho uyityelelayo ukuze ufunde ngakumbi ngale meko. Ukufundisa abahlobo kunye nosapho kwimeko leyo kuya kubavumela ukuba bakuxhase ngcono.

Iqela lakho lokhathalelo lwempilo

Ukongeza ekuncedeni ukuxilonga nokunyanga i-HAE yakho, iqela lakho lokhathalelo lwempilo lingakunika iingcebiso zokulawula imeko yakho. Nokuba unengxaki yokuphepha izinto ezibangela ukuba ube noxinzelelo okanye uneempawu zoxinzelelo okanye uxinzelelo, ungaya kwiqela lakho lokhathalelo lwempilo ngemibuzo yakho. Banokukunika iingcebiso kwaye bakuthumele kwabanye oogqirha ukuba kukho imfuneko.

Yise kude

Ukufikelela kwabanye kunye nokufunda ngakumbi nge-HAE kuya kukunceda uhambe kule meko yobomi bakho bonke. Kukho imibutho eliqela kunye nezixhobo ezikwi-Intanethi ezijolise kwi-HAE. Oku kuya kukunceda unxibelelane nabanye abaphila ne-HAE kwaye ubonelele ngezixhobo zokukunceda ufundise abanye abakungqongileyo.