Ukuthola Ukusekelwa Ku-inthanethi: Ama-Blogs, Amaforamu, namaBhodi Emilayezo amaningi

-Delile

• Yini iforamu?
• Izinkundla eziningi ze-myeloma namabhodi emiyalezo
• Amabhulogi amaningi we-myeloma
• Ukudla okudlela endlini

I-myeloma eminingi isifo esingajwayelekile. Umuntu oyedwa kuphela kwabangu-132 ozothola lo mdlavuza empilweni yabo. Uma utholwe une-myeloma eminingi, kuyaqondakala ukuthi uzizwe unesizungu noma ukhungathekile.

Uma ungenaye umuntu ozokuphendula imibuzo yakho yansuku zonke noma umuntu ohlanganyela ukwesaba nokukhathazeka kwakho, kungazizwa kwehlukaniswa kakhulu. Enye indlela yokuthola ukuqinisekiswa nokwesekwa ukuvakashela iqembu le-myeloma noma iqembu elijwayelekile lokusekela umdlavuza. Uma awekho amaqembu okusekela lapho uhlala khona noma ungafuni ukuhamba, ungathola induduzo nomphakathi owufunayo esithangamini esiku-inthanethi.

Yini iforamu?

Iforamu yiqembu lezingxoxo eliku-inthanethi noma ibhodi lapho abantu bethumela khona imiyalezo ngesihloko esithile. Umlayezo ngamunye nezimpendulo zawo zihlelwe ndawonye engxoxweni eyodwa. Lokhu kubizwa ngentambo.

Esithangamini se-myeloma eminingi, ungabuza umbuzo, wabelane ngezindaba zomuntu siqu, noma uthole izindaba zakamuva ngemithi yokwelashwa kwe-myeloma. Izihloko ngokuvamile zehlukaniswa ngezigaba. Isibonelo, i-myeloma eshisayo, imibuzo yomshwalense, noma izimemezelo zomhlangano weqembu lokusekela.

Isithangami sihlukile egumbini lengxoxo ngokuthi imilayezo ifakwa kungobo yomlando. Uma ungekho ku-inthanethi lapho othile athumela umbuzo noma ephendula omunye wemibuzo yakho, ungawufunda ngokuhamba kwesikhathi.

Ezinye izinkundla zikuvumela ukuthi ungaziwa. Abanye badinga ukuthi ungene ngemvume ngekheli le-imeyili ne-password. Imvamisa, umphathi wengamela okuqukethwe ukuze aqiniseke ukuthi kulungile futhi kuphephile.

Izinkundla eziningi ze-myeloma namabhodi emiyalezo

Nazi izinkundla ezimbalwa ezinhle ze-myeloma ongazivakashela:

• Inethiwekhi Yokusinda Komdlavuza. I-American Cancer Society inikela ngaleli bhodi lezingxoxo kubantu abane-myeloma eminingi nemindeni yabo.
• Iziguli Ezihlakaniphile.Lesi sithangami esiku-inthanethi siyisisetshenziswa sabantu abathintekayo yizimo eziningi zezempilo ezahlukahlukene, kufaka phakathi i-myeloma eminingi.
• Umkhanyo WeMyeloma. Lesi sithangami, esishicilelwa yinhlangano engenzi nzuzo ePennsylvania, besilokhu sinikeza imininingwane nokusekelwa kubantu abane-multiple myeloma kusukela ngo-2008.
• Iziguli Njengami. Le sayithi esekwe esithangamini ihlanganisa izimo zezokwelapha ezicishe zibe ngu-3 000 futhi inabahlanganyeli abangaphezu kuka-650,000 ababelana ngolwazi.

Amabhulogi amaningi we-myeloma

I-blog yiwebhusayithi efana nejenali lapho umuntu, inhlangano engenzi nzuzo, noma inkampani ithumela ama-athikili amafushane wolwazi ngesitayela sokuxoxa. Izinhlangano zomdlavuza zisebenzisa amabhulogi ukugcina iziguli zazo zisesikhathini mayelana nokwelashwa okusha kanye nabaxhasi bezimali. Abantu abane-myeloma eminingi babhala amabhulogi njengendlela yokwabelana ngolwazi lwabo, nokunikeza imininingwane nethemba kulabo abasanda kutholakala.

Noma kunini lapho ufunda ibhulogi, khumbula ukuthi kungenzeka ukuthi azibuyekezelwa ukunemba kwezokwelapha. Noma ngubani angabhala ibhulogi. Kungaba nzima ukwazi ukuthi ngabe ulwazi olufundayo lusebenza kwezokwelapha yini.

Uzokwazi ukuthola imininingwane enembile kubhulogi evela enhlanganweni yomdlavuza, eyunivesithi, noma uchwepheshe wezokwelapha ofana nodokotela noma umhlengikazi womdlavuza kunalowo othunyelwe ngumuntu. Kepha amabhulogi omuntu siqu anganikeza umuzwa obalulekile wenduduzo nozwela.

Nawa amabhulogi ambalwa anikelwe ku-myeloma eminingi:

• I-International Myeloma Foundation. Le yinhlangano enkulu kakhulu ye-myeloma, enamalungu angaphezu kwama-525,000 emazweni ayi-140.
• I-Multiple Myeloma Research Foundation (MMRF). IMMRF inikeza ibhulogi ebhalwe isiguli kuwebhusayithi yayo.
• Isixuku saseMyeloma. Le nzuzo engenziwanga ngesiguli inekhasi le-blog elinezindaba ezimayelana nemicimbi eminingi yokuqoqa imali ye-myeloma nezinye izindaba.
• Imininingwane evela kuDana-Farber. Esinye sezikhungo somdlavuza esihamba phambili ezweni sisebenzisa ibhulogi yaso ukwabelana ngezindaba ngentuthuko yocwaningo kanye nokwelashwa okuphumelelayo.
• MyelomaBlogs.org. Leli sayithi lihlanganisa amabhulogi avela kubantu abaningi abahlukahlukene abane-myeloma eminingi.
• Ikhoneni likaMargaret. Kule bhulogi, uMargaret ubhala ngemizabalazo yansuku zonke nempumelelo yokuphila nokushisa i-myeloma. Ubelokhu ebhuloga ngentshiseko kusukela ngo-2007.
• Ama-TimsWifesBlog. Ngemuva kokuthi umyeni wakhe, uTim, kutholakale ukuthi une-myeloma eningi, lo mama nonina banquma ukubhala ngempilo yabo "kwi-MM rollercoaster."
• Shayela u-M nge-Myeloma. Le bhulogi iqale njengendlela yokuthi umbhali agcine umndeni nabangane besesikhathini, kepha igcine isisizakala kubantu abanalo mdlavuza emhlabeni jikelele.

Ukudla okudlela endlini

Uma ubulokhu uzizwa unesizungu kusukela ekuhlolweni kwakho okuningi kwe-myeloma, noma udinga nje imininingwane ethile ukukusiza ekulawuleni, uzoyithola kwenye yezinkundla namabhulogi amaningi atholakala ku-inthanethi. Njengoba ubheka la makhasi ewebhu, khumbula ukuqinisekisa noma yiluphi ulwazi oluthola kubhulogi noma kwiforamu nodokotela wakho.