Ukufumana iNkxaso kwi-Intanethi: Iibhloko ezininzi zeMyeloma, iiForam, kunye neBhodi yeMiyalezo

Umxholo

• Yintoni iqonga?
• Iiforamu ezininzi ze-myeloma kunye neebhodi zemiyalezo
• Iibhloko ezininzi ze-myeloma
• Yise kude

I-myeloma eninzi isifo esinqabileyo. Kuphela ngumntu omnye kwabali-132 oya kufumana lo mhlaza ebomini babo. Ukuba uye wafumanisa ukuba une-myeloma emininzi, kuyaqondakala ukuba uzive ulilolo okanye uxakekile.

Xa ungenamntu oza kuphendula imibuzo yakho yemihla ngemihla okanye umntu owabelana noloyiko lwakho kunye nokukhathazeka, unokuziva uhlukane kakhulu. Enye indlela yokufumana ukuqinisekiswa kunye nenkxaso kukutyelela i-myeloma okanye iqela elixhasayo lomhlaza ngokubanzi. Ukuba akukho maqela enkxaso apho uhlala khona okanye awufuni kuhamba, unokufumana intuthuzelo kunye noluntu olufunayo kwiforum ye-Intanethi.

Yintoni iqonga?

Iforum liqela lengxoxo ekwi-intanethi okanye ibhodi apho abantu bathumela imiyalezo malunga nesihloko esithile. Umyalezo ngamnye kunye neempendulo zawo ziqokelelwe kwincoko enye. Oku kubizwa ngokuba ngumsonto.

Kwiforum ye-myeloma emininzi, ungabuza umbuzo, wabelane ngamabali abo, okanye ufumane iindaba zamva kunyango lwe-myeloma. Imixholo yahlulwe yangamacandelo. Umzekelo, ukutshiza i-myeloma, imibuzo ye-inshurensi, okanye iindibano zokuxhasa iintlanganiso.

Iforum yahlukile kwigumbi lokuncokola kuba imiyalezo iyagcinwa. Ukuba awukho kwi-Intanethi xa umntu ethumela umbuzo okanye ephendula omnye wemibuzo yakho, ungawufunda kamva.

Ezinye iiforamu zikuvumela ukuba ungaziwa. Abanye bafuna ukuba ungene ngemvume ngedilesi ye-imeyile kunye negama lokugqitha. Ngokwesiqhelo, imodareyitha ibeka iliso kumxholo ukuze iqiniseke ukuba kufanelekile kwaye ikhuselekile.

Iiforamu ezininzi ze-myeloma kunye neebhodi zemiyalezo

Nazi ezinye iiforamu ezininzi ezintle ze-myeloma zokundwendwela:

• Inethiwekhi yamaxhoba omhlaza. Umbutho waseMelika woMhlaza ubonelela ngale bhodi yeengxoxo kubantu abane-myeloma ezininzi kunye neentsapho zabo.
• Izigulana ezikrelekrele.Le foram ye-Intanethi sisixhobo sabantu abachatshazelwa ziimeko ezahlukeneyo zempilo, kubandakanya ne-myeloma ezininzi.
• Ibhayikhoni yaseMyeloma. Le foram, epapashwa ngumbutho ongenzi nzuzo ePennsylvania, ibinika ulwazi kunye nenkxaso kubantu abane-myeloma ezininzi ukusukela ngo-2008.
• Izigulana ezinjengam. Indawo esekwe kwiforum igubungela iimeko zonyango ezingama-3,000 kwaye inabathathi-nxaxheba abangaphezu kwama-650,000 ababelana ngolwazi.

Iibhloko ezininzi ze-myeloma

Ibhlog yiwebhusayithi efana nejenali apho umntu, umbutho ongajonganga kwenza nzuzo, okanye izithuba zenkampani ezinamanqaku amafutshane olwazi ngendlela yokuncokola. Imibutho yomhlaza isebenzisa iiblogi ukugcina izigulana zazo zisemgangathweni malunga nonyango olutsha kunye nabaxhasi bengxowa mali. Abantu abane-myeloma ezininzi babhala iiblogi njengendlela yokwabelana ngamava abo, kunye nokunikezela ngolwazi kunye nethemba kwabo basanda kufunyaniswa.

Nanini na xa ufunda ibhlog, gcinani engqondweni ukuba kungenzeka ukuba aziqwalaselwe ngokuchaneka kwezonyango. Nabani na onokubhala ibhlog. Kunokuba nzima ukwazi ukuba ngaba ulwazi olufundayo lusebenza kakuhle kwezonyango.

Uya kuba nakho ukufumana ulwazi oluchanekileyo kwibhlog evela kumbutho womhlaza, eyunivesithi, okanye ingcali yezonyango enje ngugqirha okanye umongikazi womhlaza kunaleyo ithunyelwe ngumntu. Kodwa iibhlog zakho zinokubonelela ngengqondo ebalulekileyo yokuthuthuzela kunye nemfesane.

Nazi iibhloko ezimbalwa ezinikezelwe kwi-myeloma ezininzi:

• Isiseko seMyeloma samanye amazwe. Lo ngowona mbutho mkhulu we-myeloma, onamalungu angaphezu kwama-525,000 kumazwe ali-140.
• Isiseko soPhando lweMyeloma (MMRF). I-MMRF ibonelela ngebhlog ebhaliweyo yesigulana kwiwebhusayithi yayo.
• Isihlwele seMyeloma. Le engenzi nzuzo eqhutywa sisigulana inephepha lebhlog elinamabali malunga neziganeko ezininzi zokunyusa ingxowa mali ye-myeloma kunye nezinye iindaba.
• Ingcaciso evela kuDana-Farber. Elinye lamaziko omhlaza akhokela eli lizwe asebenzisa ibhlog yalo ekwabelaneni ngeendaba malunga nenkqubela phambili yophando kunye nonyango.
• MyelomaBlogs.org. Le ndawo idibanisa iibhloko ezivela kubantu abaninzi abohlukeneyo abane-myeloma ezininzi.
• Ikona kaMargaret. Kule bhlog, uMargaret ubhala ngemizabalazo yemihla ngemihla kunye nempumelelo yokuphila ngokutshisa i-myeloma. Usebenze ngokubhloga ngokusebenzayo ukusukela nge2007.
• Ixesha leWifesBlog. Emva kokuba umyeni wakhe, uTim, efunyaniswe ene-myeloma, lo mama kunye nonina bagqiba ekubeni babhale ngobomi babo "kwiMM rollercoaster."
• Cofa u-M kwi-Myeloma. Le bhlogi iqale njengendlela yokuba umbhali agcine usapho kunye nabahlobo behlaziyiwe, kodwa yagqibela ngokuba sisibonelelo sabantu abanomhlaza kwihlabathi liphela.

Yise kude

Ukuba ubukhe uzive ulilolo ukusukela oko wafumanisa isifo se-myeloma, okanye ufuna ulwazi oluthile ukukunceda ekunyangeni, uya kuyifumana kwenye yeeforamu ezininzi kunye neeblogi ezikhoyo kwi-intanethi. Njengoko ujonga kula maphepha ewebhu, khumbula ukuqinisekisa naluphi na ulwazi olufumanayo kwibhlog okanye kwiforum nogqirha wakho.