Uyini i-Myelofibrosis? Izimpawu, Izimbangela, Nokwelapha

I-Myelofibrosis uhlobo oluyimfihlo lomdlavuza wegazi oluthinta u-bone marrow wakho, ithusi elithambile elikhona ngaphakathi kwamathambo akho lapho kwenziwa khona amaseli egazi. Kulesi simo, ithusi le-scar lithatha indawo ye-bone marrow enempilo kancane kancane, okwenza kube nzima emzimbeni wakho ukukhiqiza amaseli egazi ajwayelekile.

Lokhu kwenzeka ngoba amaseli esiqalo angajwayelekile ku-bone marrow yakho azala ngokushesha kakhulu futhi abangele ukuvuvukala. Ngokuhamba kwesikhathi, lokhu kuholela ekulimala okungaphazamisa ikhono lomzimba wakho lokwenza amaseli egazi abomvu, amaseli egazi amhlophe, nama-platelets. Nakuba kuzwakala kuyesabekayo, ukuqonda lesi simo kungakusiza uzizwe ulungile futhi ulawule.

Ziyini izimpawu ze-myelofibrosis?

Abantu abaningi abane-myelofibrosis yokuqala abanawo noma yimiphi impawu, kungakho ngezinye izikhathi itholakala ngesikhathi sokuhlolwa kwegazi okujwayelekile. Uma izimpawu zivele, zivame ukuvela kancane kancane futhi zingazizwa zifana nokulala noma ukucindezeleka kwansuku zonke.

Izimpawu ezivame kakhulu ongazibona zihlanganisa ukuzizwa ukhathele noma ubuthakathaka, ngisho nalapho uthole ubuthongo obanele. Lokhu kwenzeka ngoba umzimba wakho awenzi amaseli egazi abomvu anempilo ngokwanele ukuthwala i-oksijini kuwo wonke umzimba wakho.

Nawa izimpawu abantu abane-myelofibrosis abazibonayo njalo:

• Ukukhathala okuqhubekayo nobuthakathaka obungaphuli ngokuphumula
• Ukuphefumula okufushane ngesikhathi semisebenzi evamile
• Ukukhanya kwesikhumba, ikakhulukazi kubonakala ebusweni, ezandleni, noma ezinhlangothini zezinzipho
• Ukubulala kalula noma ukuphuza okungajwayelekile eziqashini ezincane
• Ukutheleleka okuvamile okuthatha isikhathi eside ukuphulukisa
• Ukuzizwa ugcwele ngokushesha uma udle, ngisho nokudla okuncane
• Ukungakhululeki noma ubuhlungu ohlangothini lwakho lobunxele, ngaphansi kwamaphaphu akho
• Ukwehla kwesisindo okungahloseki
• Ukushisa ebusuku okunamakha okugqoka noma amashiti akho
• Ukuvuvukala okungapheli okungena sizathu esicacile

Abanye abantu nabo baye baba nobuhlungu emathanjeni, ikakhulukazi emathanjeni amade njengezandla nezinyawo. Lolu kungakhululeki kungazizwa njengokuhlunguza okujulile futhi kungabonakala kakhulu ebusuku. Lezi zimpawu zithuthukiswa ngoba i-spleen yakho ivame ukukhula njengoba izama ukuthatha ingxenye yomsebenzi wokwenza igazi ongawenziwa yi-bone marrow yakho ngokuphumelelayo.

Ziyini izinhlobo ze-myelofibrosis?

Kunezinhlobo ezimbili eziyinhloko ze-myelofibrosis, nokuqonda ukuthi yiluphi uhlobo olukhona kusiza udokotela wakho ukuhlela indlela yokwelapha engcono kakhulu. Umehluko ukhona ekutheni isimo sithuthuka ngokwalo noma silandela esinye isifo segazi.

I-primary myelofibrosis ithuthuka ngokuqondile ku-bone marrow yakho ngaphandle kwanoma yisiphi isimo segazi esingaphambili. Lolu hlobo ngokuvamile luthinta abantu abadlula u-60, nakuba ngezinye izikhathi lungavele kubantu abadala abasebancane. Luya phambili kancane kancane, futhi abantu abaningi baphila nalo iminyaka eminingi begcina ikhwalithi yempilo enhle.

I-secondary myelofibrosis ithuthuka ngemuva kokuba ube nesinye isifo segazi esibizwa ngokuthi yi-myeloproliferative neoplasm. Izimo ezimbili ezivame kakhulu ezingaletha i-secondary myelofibrosis yi-polycythemia vera, lapho umzimba wakho wenza amaseli egazi abomvu amaningi kakhulu, ne-essential thrombocythemia, lapho ukhiqiza khona ama-platelets amaningi kakhulu.

Womabili la maqembu angabangela izimpawu nezinkinga ezifanayo. Noma kunjalo, i-secondary myelofibrosis ingathuthuka ngokubikezelwayo ngoba odokotela bavame ukulandelela ukuthi ivela kanjani esimweni sangaphambili. Iqembu lakho lezokwelapha lizocabangela uhlobo lwakho oluthile uma lixoxa ngezinketho zokwelapha nokuthi yini okulindelekile kuya phambili.

Yini ebangela i-myelofibrosis?

I-Myelofibrosis kwenzeka lapho kwenzeka izinguquko ze-genetic kumaseli esiqalo e-bone marrow yakho. Lezi azilona uhlobo lwezinguquko ze-genetic ozithola kubazali bakho, kodwa kunalokho izinguquko ezithuthuka phakathi nokuphila kwakho, ngezizathu eziningi esingaziqondi ngokugcwele.

I-genetic change evamile ihlobene nokuthile okubizwa nge-JAK2 gene, etholakala cishe kwesigamu sabantu abane-myelofibrosis. Abanye abantu bangaba nezinguquko ezinjini ebizwa nge-CALR noma i-MPL. Lezi zinguquko ze-genetic zenza amaseli e-bone marrow yakho azenze ngokungajwayelekile, okuholela ekuvuvukaleni futhi ekugcineni kulimala.

Kubalulekile ukwazi ukuthi i-myelofibrosis ayithwali futhi awukwazi ukuyithumela kulabo abangamalungu omndeni wakho ngokuxhumana. Izimo eziningi zithuthuka ngokungahlosiwe, ngaphandle kwanoma yisiphi isizathu esicacile noma isizathu ongabeluvinjelanga. Nakuba abanye abantu bakhathazeka ngezinto ezingobungozi noma izinqumo zokuphila, abacwaningi abazange baqonde izimbangela ezingaphandle eziningi zezimo eziningi.

Ezimeni ezingavamile, ukwelashwa kwangaphambili komdlavuza okuhilela ukukhanya noma imithi ethile ye-chemotherapy kungase kukhulise ingozi yokuthuthukisa i-myelofibrosis eminyakeni eminingi kamuva. Noma kunjalo, lokhu kubalwa kuphela ingxenye encane yezimo. Iningi labantu abanesimo esinjalo bayithuthukisa ngaphandle kwanoma yisiphi isizathu esiqondiwe, okungazwakala kuyadumaza kodwa kuyinto evamile.

Nini kufanele ubheke udokotela nge-myelofibrosis?

Kufanele uxhumane nodokotela wakho uma uhlangabezana nokukhathala okuqhubekayo okungaphuli ngokuphumula, ikakhulukazi uma kuhambisana nezinye izimpawu ezinkulu. Nakuba lezi zimpawu zingaba nezizathu eziningi, kuhlale kungcono ukuzihlola kunokukhathazeka ngazo.

Hlela i-aphoyintimenti uma ubona ukubulala okungajwayelekile okuvela ngaphandle kokulimaza, noma uma iziqashana ezincane ziphuza isikhathi eside kunokuqondakala. Lokhu kungaba izimpawu zokuthi inani le-platelet yakho liphansi kunokujwayelekile. Ngokufanayo, uma ugula kaningi kunokujwayelekile noma ukutheleleka kubonakala kuhlala isikhathi eside, lokhu kungase kubonise izinguquko enanini lamaseli egazi amhlophe.

Qaphela izinguquko ekudleni kwakho noma uma uzizwa ugcwele ngemuva kokudla ukudla okuncane. Lokhu kuzizwa, kanye nokungakhululeki ohlangothini lwakho lobunxele ngaphansi kwamaphaphu akho, kungase kubonise ukuthi i-spleen yakho ikhulu. Ungawagcini ukushisa ebusuku okuqhubekayo, ukwehla kwesisindo okungachazeki, noma ukuvuvukala okungapheli okuza nokuhamba.

Uma unomlando we-polycythemia vera noma i-essential thrombocythemia, hlala uxhumana njalo nodokotela wakho wegazi. Bazokulandelela izimpawu zokuthi isimo sakho singase siqhubekele kwi-myelofibrosis. Ukutholakala kwangaphambi kwesikhathi nokulandelela kungenza umehluko omkhulu ekulawuleni izimpawu zakho nokuhlela ukunakekelwa kwakho.

Ziyini izimbangela zengozi ze-myelofibrosis?

Ukuqonda izimbangela zengozi zakho kungakusiza ubeke lesi simo ngendlela efanele, nakuba kubalulekile ukukhumbula ukuthi ukuba nezimbangela zengozi akusho ukuthi uzokuthuthukisa ngokuqinisekile i-myelofibrosis. Abantu abaningi abanezimbangela zengozi abayithuthukisi le simo, kanti abanye abangenazo izimbangela zengozi ezicacile bayenza.

Ubudala yimbangela enkulu yengozi, ngezimo eziningi ezenzeka kubantu abadlula iminyaka engama-60. Noma kunjalo, i-myelofibrosis ngezinye izikhathi ingathinta abantu abadala abasebancane futhi, ezimweni ezingavamile, ngisho nezingane. Amadoda nabesifazane bayathinteka ngokulinganayo, ngakho-ke ubulili abuthinti izimbangela zengozi yakho.

Nawa amaphuzu ayinhloko angase akhulise ingozi yakho:

• Ubudala obungaphezu kweminyaka engama-60
• Ukuxilongwa kwangaphambili kwe-polycythemia vera noma i-essential thrombocythemia
• Ukukhanya kwangaphambili kwe-radiation therapy enkulu
• Ukwelashwa kwangaphambili ngemithi ethile ye-chemotherapy
• Ukukhanya ngamakhemikhali emisebenzi njenge-benzene noma i-toluene

Ukuba nesinye i-myeloproliferative neoplasm kukhulise kakhulu ingozi yakho yokuthuthukisa i-secondary myelofibrosis. Cishe i-10-20% yabantu abane-polycythemia vera ne-5-10% yalabo abane-essential thrombocythemia ekugcineni bayathuthukisa i-myelofibrosis eminyakeni eminingi.

Ukwelashwa komdlavuza kwangaphambili yimbangela encane yengozi kodwa ebalulekile. Uma uthole i-radiation therapy noma imithi ethile ye-chemotherapy eminyakeni eminingi edlule, ingozi yakho ingase ikhuphuke kancane. Noma kunjalo, izinzuzo zokwelashwa komdlavuza zidlula kakhulu le ngongozi encane eyongeziwe, futhi abantu abaningi abaphila ngemuva komdlavuza abayithuthukisi i-myelofibrosis.

Ziyini izinkinga ezingase zenzeke nge-myelofibrosis?

Nakuba ukucabanga ngezinkinga kungase kuzwakale kuyadumaza, ukuqonda ukuthi yini engase iyenzeke kusiza wena neqembu lakho lezokwelapha ukubuka izimpawu zokuqala nokuthatha izinyathelo zokuvimbela uma kungenzeka. Khumbula ukuthi abantu abaningi abane-myelofibrosis baphila iminyaka eminingi ngaphandle kokubhekana nezinkinga ezinkulu.

Izinkinga ezivame kakhulu zihilela ukubala kwegazi kwakho okwehla kakhulu noma okuphakama kakhulu. I-anemia eqinile ingathuthuka lapho i-bone marrow yakho ingakwazi ukukhiqiza amaseli egazi abomvu ngokwanele, okuholela ekukhathaleni okukhulu nokuphefumula okufushane okuhlupha imisebenzi yansuku zonke.

Nawa izinkinga odokotela abazilandelelayo:

• I-anemia eqinile edinga ukudluliselwa kwegazi
• Inani le-platelet eliphansi eliyingozi eliholela ekopha okukhulu
• Ukungena ingozi yokutheleleka ngenxa yenani eliphansi lamaseli egazi amhlophe
• Ukukhula okukhulu kwe-spleen okubangela ubuhlungu nezinkinga zokugaya
• I-portal hypertension ethinta ukugeleza kwegazi ngaphesheya kwesibindi sakho
• Ama-blood clots ezindaweni ezingajwayelekile
• Ukuguqulwa lube yi-acute leukemia

Izinkinga ezihlobene ne-spleen zingathinta kakhulu ikhwalithi yempilo yakho. Njengoba i-spleen yakho ikhula, ingase icindezele isisu sakho, okwenza uzizwe ugcwele ngokushesha futhi okuholela ekwehleni kwesisindo okungahloseki. Ezimweni ezinkulu, i-spleen enkulu ingabangela ubuhlungu futhi idinge ukwelashwa.

Esinye sezinkinga ezinkulu kodwa ezingavamile yilokho okuthi ukuguqulwa kube yi-acute leukemia, okwenzeka cishe ku-10-20% yabantu abane-myelofibrosis eminyakeni eminingi. Nakuba lokhu kuzwakala kuyesabekayo, udokotela wakho uzolandelela ukubala kwegazi kwakho njalo futhi abuke izimpawu zokuqala. Abantu abaningi abane-myelofibrosis ababhekani nale nkinga.

I-myelofibrosis ixilongwa kanjani?

Ukuxilongwa kwe-myelofibrosis kuhilela ukuhlolwa okuhlukahlukene okusisiza udokotela wakho ukuqonda ukuthi yini eyenzekayo ku-bone marrow yakho negazi. Inqubo ingase ibukeke iningi, kodwa yonke i-test inikeza ulwazi olubalulekile oluqondisa uhlelo lwakho lokwelapha.

Udokotela wakho uzoqala ngokubala okugcwele kwegazi, okuqapha izinhlobo ezahlukene zamaseli egazi ohlelweni lwakho. Abantu abane-myelofibrosis bavame ukuba nokubala kwegazi okungajwayelekile, njengokuba namaseli egazi abomvu amancane kakhulu, ukubala kwegazi amhlophe okungajwayelekile, noma amazinga e-platelet aphakeme kakhulu noma aphansi kakhulu.

I-bone marrow biopsy yi-test eqinisekile kakhulu ye-myelofibrosis. Nakuba lokhu kungase kuzwakale kungakhululeki, udokotela wakho uzosebenzisa imithi yokunciphisa ubuhlungu ukuze anciphise ubuhlungu. Bazokuthatha isampula encane ye-bone marrow, ngokuvamile emathanjeni akho, ukuyihlola ngaphansi kwesikrini sokulimala namaseli angajwayelekile.

Ukuhlolwa kwe-genetic kusampula yakho yegazi noma ye-bone marrow kungabonisa izinguquko ezithile ze-genetic njenge-JAK2, i-CALR, noma i-MPL. Ukuthola lezi zinguquko ze-genetic kusiza ukuqinisekisa ukuxilongwa futhi kungathinta izinqumo zokwelapha. Udokotela wakho angase futhi a-ode i-imaging tests njenge-ultrasound noma i-CT scan ukuhlola usayizi we-spleen yakho nesibindi.

Inqubo yonke yokuxilongwa ngokuvamile ithatha amasonto ambalwa kusukela ekuhlolweni kwakho kokuqala kwegazi kuze uthole imiphumela yokugcina. Iqembu lakho lezokwelapha lizoqonda yonke inyathelo futhi likusize uqonde ukuthi imiphumela isho ukuthini esimweni sakho esithile.

Yini ukwelashwa kwe-myelofibrosis?

Ukwelashwa kwe-myelofibrosis kugxile ekulawuleni izimpawu zakho nokuvimbela izinkinga kunokwelapha isimo ezimweni eziningi. Udokotela wakho uzoqamba uhlelo olufanele ngokusekelwe ezimpawu zakho, ukubala kwegazi, ubudala, nempilo yakho yonke.

Uma unezimpawu ezilula nokubala kwegazi okuzinzile, udokotela wakho angase akukhuthaze indlela "yokubuka nokulinda" ngokulandelela okujwayelekile. Lokhu akusho ukuqaphela isimo, kodwa kunokuba ugweme ukwelashwa okungadingeki lapho uzizwa kahle futhi ukubala kwegazi kwakho kuphatheka.

Kubantu abanezibonakaliso, izinketho eziningi zokwelapha zingakusiza uzizwe ukhulu:

• Abaphikisi be-JAK ukuze banciphise usayizi we-spleen futhi bathuthukise izimpawu
• Ukudluliselwa kwegazi nge-anemia eqinile
• Imithi yokukhuthaza ukukhiqizwa kwamaseli egazi abomvu
• Ukwelashwa ukulawula i-spleen enkulu
• Ukukhathalela okusekela izimpawu ezifana nokukhathala nobuhlungu
• I-stem cell transplant kubantu abadala abafanelekayo abasebancane

Abaphikisi be-JAK njenge-ruxolitinib banganciphisa kakhulu usayizi we-spleen futhi bathuthukise izimpawu ezifana nokukhathala, ukushisa ebusuku, nokuhlala ugcwele ngokushesha. Le mi-thi isebenza ngokuvimba izibonakaliso ezingajwayelekile ezibangela ukuvuvukala nokulimala ku-bone marrow yakho.

Kubantu abadala abasebancane, abaphilile, i-stem cell transplant ingase inikeze ithuba lokuphulukisa. Lokhu kuhilela ukufaka indawo ye-bone marrow yakho egulayo ngamaseli esiqalo anempilo evela kumnikelo. Noma kunjalo, lokhu kwelashwa kunezingozi ezinkulu futhi akuyona into efanelekile kuwo wonke umuntu, ikakhulukazi abantu abadala noma labo abanezimo zezempilo.

Ungayilawula kanjani i-myelofibrosis ekhaya?

Ukulawula i-myelofibrosis ekhaya kuhilela ukunakekela impilo yakho yonke ngenkathi usebenza neqembu lakho lezokwelapha. Izinqumo ezincane zansuku zonke zingenza umehluko omkhulu endleleni ozizwa ngayo futhi zisize ukuvimbela izinkinga.

Gxilisa ukudla ukudla okunomsoco ngisho nalapho ukudla kwakho kubi. Njengoba ungase uzizwe ugcwele ngokushesha, zama ukudla ukudla okuncane, okuvamile usuku lonke. Faka ukudla okunamaprotheni amaningi njengenyamasende ezinwebe, izinhlanzi, amaqanda, noma amabhinca ukuze ugcine amandla akho futhi usekele isimiso sakho sokugcina.

Hlala usebenza ngangokunokwenzeka ngaphakathi kwamandla akho. Ukuzivocavoca okulula njengokuhamba, ukuqubha, noma i-yoga kungakusiza ukulwa nokukhathala nokugcina amandla akho. Lalela umzimba wakho uphumule uma udinga, kodwa zama ukugwema ukuba uhlale phansi ngokuphelele ngaphandle uma udokotela wakho ekukhuthaza.

Zivikele ekuthelelekeni ngokuhlanza izandla zakho njalo nokugwema izindawo ezihlanganayo ngesikhathi sesizini ye-flu. Thola ukugonywa okusikisela, kodwa hlola nodokotela wakho kuqala njengoba ezinye izigonyo zingase zingafaneleki kuye ngokwelashwa kwakho. Qaphela iziqashana neziqongo, uzigcine zicocekile futhi zivalwe kuze ziphulukise.

Lawula amandla akho usuku lonke ngokubeka phambili imisebenzi ebalulekile nokucele usizo uma udinga. Abantu abaningi bathola usizo olukhulu ekuqaleni kwemisebenzi enzima lapho bezizwa banamandla kakhulu, ngokuvamile ekuseni. Unganqikazi ukushintsha isikhathi sakho noma udele izibopho kulabo abangamalungu omndeni noma abangane.

Kufanele ulungiselele kanjani i-aphoyintimenti yakho yodokotela?

Ukulungiselela i-aphoyintimenti yakho yodokotela kungakusiza uthole okuningi ekuhambeni kwakho futhi kuqinisekise ukuthi awukhohlwa imibuzo noma ukukhathazeka okubalulekile. Ukuzilungiselela kancane kungenza lezi zi-aphoyintimenti zizizwe zinemveliso kakhulu futhi zingadumazi.

Gcina idayari yempawu phakathi kwama-aphoyintimenti, uqaphele amazinga akho amandla, noma yiziphi izimpawu ezintsha, nokuthi uyaphendula kanjani ekwelapheni. Faka imininingwane mayelana nokudla kwakho, ikhwalithi yobuthongo, nanoma yimiphi imisebenzi ebe nzima. Lolu lwazi lusiza udokotela wakho ukuqonda ukuthi isimo likuthinta kanjani impilo yakho yansuku zonke.

Bhala imibuzo yakho ngaphambi kwe-aphoyintimenti ukuze ungayikhohlwa ngesikhathi sokuvakasha. Imibuzo evamile ingase ihlanganise ukubuza ngemiphumela yakho yakamuva yokuhlolwa kwegazi, ukuxoxa nganoma yiziphi izimpawu ezintsha, noma ukuqonda ukuthi yini okulindelekile ezinyangeni ezizayo. Ungakhathazeki ngokubuza imibuzo eminingi kakhulu – iqembu lakho lezokwelapha lifuna ukukusiza uqonde isimo sakho.

Letha uhlu oluphelele lwemithi yonke, izithasiselo, namavithamini owathatha, kufaka phakathi amazinga nokuthi uwathatha kangakanani. Lokhu kusiza ukuvimbela ukusebenzisana kwemithi futhi kuqinisekise ukuthi ukwelashwa kwakho kusebenza ndawonye ngokuphumelelayo. Cabanga ukuletha ilungu lomndeni noma umngane ukukusiza ukukhumbula ulwazi olubalulekile oluxoxwe ngesikhathi se-aphoyintimenti.

Lungiselela ukuhlolwa kwegazi ngokuhlala uthambile futhi ugqoke ihembe elinamakha ezingase ziqondwe kalula. Uma uthanda ukukhathazeka ngezinsimbi, xhumana neqembu lakho lezokwelapha – bangakusiza ukwenza isipiliyoni sibe lula kuwe.

Yini okufanele uyikhumbule nge-myelofibrosis?

I-Myelofibrosis yisimo esinzima, kodwa kubalulekile ukukhumbula ukuthi abantu abaningi baphila nalo iminyaka eminingi begcina ikhwalithi yempilo enhle. Nakuba ingaphuliwa ezimweni eziningi, ukwelashwa okuphumelelayo kungasiza ekulawuleni izimpawu nokuvimbela izinkinga.

Isiphetho sakho siyancika ezintweni eziningi kufaka phakathi ubudala bakho, impilo yonke, izinguquko ezithile ze-genetic, nokuthi uyaphendula kangcono kanjani ekwelapheni. Abanye abantu banesimo esihamba kancane esidinga ukwelashwa okuncane, kanti abanye badinga ukulawulwa okukhulu. Iqembu lakho lezokwelapha lizokusiza uqonde ukuthi yini okulindelekile ngokusekelwe esimweni sakho.

Into ebaluleke kakhulu ongayenza iwukugcina ukuxhumana okuvulekile neqembu lakho lezokunakekelwa kwezempilo nokulandelwa njalo ngisho nalapho uzizwa kahle. Ukutholakala kwangaphambi kwesikhathi nokulawulwa kwezinkinga kungenza umehluko omkhulu esikhathini eside.

Khumbula ukuthi ucwaningo lwe-myelofibrosis luqhubeka, ngokwelashwa okusha okuthuthukiswa nokulingwa njalo. Izivivinyo zeklinikhi zingase zinikeze ukufinyelela ekwelapheni okusha okuthembisayo, futhi udokotela wakho angakusiza uqonde ukuthi yiziphi izivivinyo zocwaningo ezingase zifaneleke esimweni sakho.

Imibuzo evamile mayelana ne-myelofibrosis

Ingabe i-myelofibrosis uhlobo lomdlavuza?

Yebo, i-myelofibrosis ibhekwa njengohlobo lomdlavuza wegazi, ikakhulukazi i-myeloproliferative neoplasm. Noma kunjalo, iziphatha ngokuhlukile kunomdlavuza eminye eminingi ngoba ngokuvamile iya kancane kancane eminyakeni kunokuba yizinyanga. Abantu abaningi abane-myelofibrosis baphila iminyaka eminingi ngekhwalithi yempilo enhle, ikakhulukazi ngokwelashwa okulungile nokulandelwa.

Ingabe i-myelofibrosis ingadluliselwa?

I-Myelofibrosis ngokuvamile ayidluliselwa kubazali bakho. Izinguquko ze-genetic ezibangela lesi simo ngokuvamile zithuthuka phakathi nokuphila kwakho kunokuba zidluliselwe emindenini. Nakuba izimo zomndeni ezingavamile zibikwe, iningi labantu abane-myelofibrosis abanawo amalungu omndeni anesimo esifanayo, futhi awukwazi ukuyithumela kubantwana bakho.

Umuntu angaphila isikhathi esingakanani ene-myelofibrosis?

Isiphetho se-myelofibrosis sihluka kakhulu kumuntu nomuntu. Abanye abantu baphila iminyaka eminingi ngezimpawu ezincane, kanti abanye bangase babe nokuqhubeka okusheshayo. Udokotela wakho uzoqonda izimbangela zengozi zakho futhi akusize uqonde isiphetho sakho esithile. Izinto ezifana nobudala, ukubala kwegazi, izinguquko ze-genetic, nempilo yonke zithinta isiphetho sakho.

Ingabe ngizodinga ukudluliselwa kwegazi njalo?

Akuwona wonke umuntu one-myelofibrosis odinga ukudluliselwa kwegazi. Ukuthi uzolidinga yini kuncika ekutheni isimo likuthinta kangakanani ukukhiqizwa kwamaseli egazi abomvu. Abanye abantu abadingi ukudluliselwa, kanti abanye bangase balidinga ngezinye izikhathi noma njalo uma i-anemia yabo ibe nzima. Iqembu lakho lezokwelapha lizolandelela ukubala kwegazi kwakho futhi lixoxe ngokudluliselwa uma kudingeka.

Ingabe izinguquko zokuphila zingasiza ekulawuleni i-myelofibrosis?

Nakuba izinguquko zokuphila zingaphuli i-myelofibrosis, zingakusiza uzizwe ukhulu futhi zinciphisa ezinye izinkinga. Ukudla ukudla okulinganiselayo, ukuhlala usebenza ngokufanele, ukuthola ubuthongo obanele, nokugwema ukutheleleka konke kungase kube nomthelela empilweni yakho yonke. Noma kunjalo, ukwelashwa kwezokwelapha kuhlala kuyinto ebaluleke kakhulu ekulawuleni lesi simo, ngakho-ke izinguquko zokuphila kufanele zengeze kunokuba zifake indawo yokwelashwa kwakho okunikeziwe.