Kumene Mungapeze Thandizo la Angioedema Wobadwa Nawo

Zamkati

• Mabungwe
• Mgwirizano wa US HAE
• Tsiku la HAE ndikuyenda kwapadziko lonse lapansi
• National Organisation for Rare Diseases (NORD) ndi Tsiku Lopanda Matenda
• Malo ochezera
• Anzanu ndi abale
• Gulu lanu lachipatala
• Tengera kwina

Chidule

Hereditary angioedema (HAE) ndichikhalidwe chosowa chomwe chimakhudza pafupifupi 1 mwa anthu 50,000. Matendawa amachititsa kutupa mthupi lanu lonse ndipo amatha kulunjika pakhungu lanu, m'mimba, komanso kumtunda kwenikweni.

Kukhala ndi vuto losowa kwambiri nthawi zina kumasungulumwa, ndipo mwina simudziwa komwe mungapeze malangizo. Ngati inu kapena wokondedwa wanu adapezeka ndi HAE, kupeza chithandizo kungapangitse kusintha kwakukulu m'moyo wanu watsiku ndi tsiku.

Mabungwe ena amalimbikitsa zochitika zodziwitsa anthu monga misonkhano ndi mayendedwe olinganizidwa. Muthanso kulumikizana ndi ena pamasamba ochezera komanso pa intaneti. Kuphatikiza pa izi, mutha kupeza kuti kucheza ndi okondedwa anu kungakuthandizeni kusamalira moyo wanu ndi vutoli.

Nazi zina mwazomwe mungapezeko kuti muthandizidwe ndi HAE.

Mabungwe

Mabungwe odzipereka ku HAE ndi matenda ena osowa amatha kukudziwitsani za chithandizo chamankhwala, kulumikizana ndi ena omwe akhudzidwa ndi vutoli, ndikuthandizani kulimbikitsa omwe ali ndi vutoli.

Mgwirizano wa US HAE

Gulu limodzi lolimbikitsa kuzindikira ndi kulimbikitsa HAE ndi US HAE Association (HAEA).

Webusayiti yawo ili ndi chidziwitso chambiri chokhudza vutoli, ndipo amapereka mamembala aulere. Umembala umaphatikizira kufikira magulu othandizira pa intaneti, kulumikizana ndi anzawo, komanso zambiri zokhudzana ndi zachipatala za HAE.

Bungweli limasunganso msonkhano wapachaka wosonkhanitsa mamembala. Muthanso kulumikizana ndi ena pazanema kudzera pa Facebook, Twitter, Instagram, YouTube, ndi akaunti za LinkedIn.

US HAEA ndikulongosola kwa HAE International. Bungwe lapadziko lonse lopanda phindu limalumikizidwa ndi mabungwe a HAE m'maiko 75.

Tsiku la HAE ndikuyenda kwapadziko lonse lapansi

Meyi 16 ikuwonetsa tsiku Lodziwitsa za HAE padziko lonse lapansi. HAE International imapanga mayendedwe apachaka kuti akadziwitse anthu za vutoli. Mutha kuyenda payekha kapena kufunsa abwenzi ndi abale kuti atenge nawo mbali.

Lembetsani pa intaneti ndipo phatikizani cholinga cha kutalika komwe mukufuna kukayenda. Kenako, yendani kwakanthawi pakati pa Epulo 1 ndi Meyi 31 ndikunena mtunda wanu womaliza pa intaneti. Bungwe limasunga kuwerengera masitepe omwe anthu amayenda padziko lonse lapansi. Mu 2019, ophunzira adalemba mbiri ndikuyenda masitepe opitilira 90 miliyoni.

Pitani patsamba la HAE Day kuti mumve zambiri za tsikuli lachitetezo chaka ndi chaka komanso mayendedwe apachaka. Muthanso kulumikizana ndi Tsiku la HAE pa Facebook, Twitter, YouTube, ndi LinkedIn.

National Organisation for Rare Diseases (NORD) ndi Tsiku Lopanda Matenda

Matenda achilendo amafotokozedwa ngati zinthu zomwe zimakhudza anthu ochepera 200,000. Mutha kupindula polumikizana ndi omwe ali ndi matenda ena osowa monga HAE.

Tsamba la NORD lili ndi nkhokwe yomwe imaphatikizaponso chidziwitso cha matenda opitilira 1,200. Muli ndi mwayi wopezera malo othandizira odwala komanso owasamalira omwe ali ndi mapepala ndi zinthu zina. Komanso, mutha kulowa nawo RareAction Network, yomwe imalimbikitsa maphunziro ndi kulengeza zamatenda osowa.

Tsambali limaphatikizaponso zambiri za Tsiku Losiyanasiyana la Matenda. Tsiku lopititsa patsogolo komanso lodziwitsa anthu za pachaka limakhala patsiku lomaliza la February chaka chilichonse.

Malo ochezera

Facebook ikhoza kukugwirizanitsani ndi magulu angapo omwe aperekedwa ku HAE. Chitsanzo chimodzi ndi gulu ili, lomwe lili ndi mamembala oposa 3,000. Ndi gulu lotsekedwa, chifukwa chake chidziwitso chimakhala mgulu la anthu ovomerezeka.

Mutha kulumikizana ndi ena kuti mukambirane mitu monga zomwe zimayambitsa HAE ndi zizindikiritso, ndi njira zingapo zamankhwala zothandizira vutoli. Komanso, mutha kupereka ndi kulandira maupangiri pakuwongolera zochitika pamoyo wanu watsiku ndi tsiku.

Anzanu ndi abale

Pambuyo pa intaneti, anzanu ndi abale anu atha kukuthandizani mukamayenda ndi HAE. Okondedwa anu akhoza kukutsimikizirani, kukuthandizani kuti mupeze chithandizo choyenera, ndikukhala khutu lomvera.

Mutha kuwongolera abwenzi ndi abale omwe akufuna kukuthandizani kumabungwe omwewo omwe mumawachezera kuti mudziwe zambiri za vutoli. Kuphunzitsa abwenzi ndi abale pamtunduwu kudzawathandiza kukuthandizani.

Gulu lanu lachipatala

Kuphatikiza pakuthandizira kuzindikira ndi kuchiritsa HAE yanu, gulu lanu lazachipatala lingakupatseni maupangiri kuti musamalire matenda anu. Kaya muli ndi vuto lopewa zomwe zimayambitsa kapena mukukumana ndi zizindikilo za nkhawa kapena kukhumudwa, mutha kupita ku gulu lanu lazachipatala ndi mafunso anu. Amatha kukulangizani ndikukutumizirani kwa madokotala ena ngati kuli kofunikira.

Tengera kwina

Kufikira ena ndikuphunzira zambiri za HAE kudzakuthandizani kuyendetsa izi kwa moyo wanu wonse. Pali mabungwe angapo ndi zinthu zapaintaneti zomwe zimayang'ana HAE. Izi zikuthandizani kulumikizana ndi ena omwe mukukhala ndi HAE ndikupatsaninso zida zokuthandizani kuphunzitsa ena okuzungulirani.