Yu don eva yehri boht "Waldenström Macroglobulinemia"? Sɔntɛm nɔto so. Na lɔng nem we at fɔ kɔl am, nɔto so? Bɔt nɔ wɔri. Na wan kayn blɔd kansa we nɔ kin bɔku, bɔt we kin rili kɔmɔn. Tide, wi go tɔk bɔt dis kɔndishɔn insay simpul langwej we yu go ɔndastand, lɛk fɔ tɔk to yu padi. Lɛ wi si wetin i rili bi, wetin de sho se i gɛt dis sik, ɛn aw dɛn kin trit am.
Wetin rili na Waldenström Macroglobulinemia (WM)?
Fɔ tɔk am simpul wan, dis na kansa we kin afɛkt yu blɔd. Fɔ tɔk tru, i de pan wan grup we gɛt kansa we dɛn kɔl Limfoma, ɛn na wan kayn limfoma we nɔto Hɔdgkin. Dɛn kin kɔl am bak limfoplasmasaytik limfoma. I nɔ kin apin so ɔltɛm. Ivin na kɔntri lɛk Amɛrika, na tri to 4 pipul dɛn nɔmɔ i kin afɛkt pan wan milyɔn. So yu kin imajin aw i nɔ kin bɔku.
Naw lɛ wi si aw dis kin mek insay di bɔdi.
wan pan di imכtant kayn sεl dεm na wi imyun sistεm dεn kכl am ``B sεl dεm.`` dεn de mek dεm na wi bon mכro. Yu no se bon mɛro na ples insay wi bon dɛn we tan lɛk faktri we de mek blɔd sɛl.
so, insay WM, dεn hεlty B sεl dεm ya de tכn to kεnsar sεl dεm εn bigin fכ divayd εn mכltiply we dεn nכ de kכntro. We dɛn kansa sɛl ya ful-ɔp di bon mɛro, dɛn kin krawd wi blɔd sɛl dɛn we gɛt wɛlbɔdi.
So, tri men kayn blɔd sɛl dɛn kin ridyus:
- di rεd bכdi sεl dεm we de dכn: dεn kכl dis ``anemia''. Dis na wetin de mek yu fil taya bad bad wan ɛn yu nɔ gɛt layf .
- di Wait Blכd Sεl dεm we de dכn: dεn kכl dis ``nyutropenia.`` Wait bכdi sεl dεm lεk sojaman dεm na wi bכdi. Dɛn sɛl dɛn ya de protɛkt wi frɔm sik dɛn. So we dɛn sɛl ya dɔn dכn , infεkshכn kin apin bכku tεm .
- di pletlet dεm we dεn dכn dכn: dεn kכl dis `(thrombocytopenia).` dεn wan ya de εp di bכdi fכ kכlכt. Na dɛn kin stɔp blɔd ivin frɔm smɔl wund. So we di pletlɛt dɛn nɔ bɔku, ivin smɔl wund nɔ kin ebul fɔ stɔp fɔ blɔd, ɛn yu kin gɛt brus na yu bɔdi .
pan tap dat, dεn kεnsar sεl dεm ya de prodyuz bכku bכku wan abnכmal protin we dεn kכl `(immunoglobulin M)` כ `(IgM)`. we dis `(IgM)` protin de kכmכt na di bכdi, wi bכdi de tik. Imajin se blɔd we fɔ tan lɛk wata, de tik lɛk srɔp. dis dεn kכl am `(hyperviscosity syndrome)` insay mεdikal sayns.
We blɔd tik lɛk dis, i nɔ kin izi fɔ am fɔ muv tru di fayn fayn smɔl smɔl blɔd vesel dɛn na wi bɔdi. Dis kin mek yu gɛt siriɔs sayn lɛk fɔ gɛt diziz ɛn fɔ blɔd na yu nos.
No mɛrɛsin nɔ de fɔ WM yet. Bɔt bikɔs i kin bɔku, if dɛn trit am fayn, dɛn kin ebul fɔ kɔntrol di sik dɛn, ɛn sɔntɛnde dɛn kin pul am kɔmɔt kpatakpata, ɛn pipul dɛn kin liv fayn fɔ lɔng lɔng tɛm.
Wetin na di poshubul simptom dɛm fɔ WM sik?
De amazing tin na dat, lɛk wan pan ɔl 4 pipul dɛm wae gɛt dis sik nɔr kin sho ɛni sayn. Dɛn kin no bɔt dɛn bay chans we dɛn de du tɛst we dɛn go si dɔktɔ fɔ ɔda sik. If di sayn dɛm de sho, dɛn kin kam smɔl smɔl, smɔl smɔl.
Lɛ wi luk di kɔmɔn sayn dɛm lɛk dis.
| Di sayn we de sho se di sik de | Fɔ tɔk am simpul wan... |
|---|---|
| Wiknɛs ɛn taya pasmak | Fɔ fil taya ilɛksɛf yu slip bɔku, we kin kam bikɔs yu nɔ gɛt rɛd blɔd sɛl (anemia). |
| Fiva we nɔ gɛt ɛni rizin | Fiva we nɔ gɛt ɛni infekshɔn. |
| I nɔ kin want fɔ it ɛn i nɔ kin gɛt bɔku bɔku bɔdi | We yu de lɔs yu wet witout ɛni tray, we yu nɔ no. |
| Fɔ swet pasmak na nɛt | Swet so dat yu nɔ ebul fɔ slip, di sheet dɛn wet. |
| Memori ɛn kɔnshɛns distɔblɛshɔn (Kɔnfyushɔn) . | Strɔk kin apin bikɔs di blɔd nɔ de flɔ na di bren bikɔs di blɔd de klɔt. |
| Di liva, di splin, ɔ di limf no dɛn kin swel | Di kansa sɛl dɛn kin gɛda na dɛn ɔgan dɛn ya, ɛn dis kin mek dɛn big. |
| di limb dεm we de sכmtεm sכmtεm (Peripheral Neuropathy) . | Wan tin we de mek pɔsin fil lɛk se i de swɛt na di finga dɛn ɛn di fut finga dɛn, lɛk se ant dɛn de rɔn rawnd. |
| Di sayn dɛn we de sho se blɔd de klɔt | Nɔs blɔd, blɔd we de kɔmɔt na yu gɔm we yu de brus yu tit, diziz, ed we de at ɔltɛm , we yu nɔ de si fayn. |
Wetin mek dis kayn sik kin apin?
Di men rizin fɔ dis na di chenj we de apin na di jɛnɛtiks. Dat min se, di chenj dɛn we de apin na wi jin dɛn. Nayn pan 10 pipul dεm we gεt WM gεt mכtεshכn na wan jin we dεn kכl ``MYD88``. εn lεk fכ pan 10 pipul dεm gεt chenj na wan jin we dεn kכl ``CXCR4``. di chenj dεm we de apin na dεn tu jin dεm ya de εp di abnכmal kεnsar sεl dεm fכ sheb εn gro kwik kwik wan.
Bɔt di tin we impɔtant pas ɔl ɛn we de mek pɔsin fil fayn na ya na dat, dɛn chenj ya we de apin na di jɛnɛtiks nɔto frɔm dɛn mama ɛn papa dɛn.
Dat min se, dis nɔto sɔntin we yu gɛt frɔm yu mama ɔ papa. Ɛn nɔto sɔntin we yu kin pas to yu pikin dɛn. Dis na nyu chenj dεm we de apin insay di bכdi we i de liv.
Bɔt di wan dɛn we de stɔdi bɔt dis nɔ ebul fɔ fɛn wan patikyula rizin yet we mek dɛn chenj dɛn ya we kin apin na di jɛnɛtiks kin apin.
Wetin na de tin wae kin mek pɔrsin gɛt dis sik?
Sɔm tin dɛn de we kin mek pɔsin gɛt dis sik smɔl. Bɔt if dis tin de, dat nɔ min se di sik go bigin.
| Risk factor | Tɔk bɔt |
|---|---|
| Ej | Dɛn kin no dis sik pasmak pan pipul dɛm wae dɔn pas 65 ia. |
| Neshɔn | Dɛn kin si am pan wayt pipul dɛn. |
| Bɔy ɔ gal | Man dɛn kin gɛt am pas uman dɛn. |
| Ɔda tin dɛn we kin apin to pɔsin we sik | Pipul wae gɛt sik lɛk Epataytis C, AIDS, ɛn Sjögren’s Syndrome kin gɛt bɔrku risk. Wan kɔndishɔn we dɛn kɔl ``(MGUS)`` kin bi bak prɛkursɔ fɔ WM. Bɔt nɔto ɔlman we gɛt MGUS go divɛlɔp WM. |
| Famili histri bɔt sik | Di risk kin go ɔp smɔl if yu fambul na yu blɔd dɔn gɛt WM ɔ ɔda kayn limfoma. |
Aw di dɔktɔ kin no bɔt dis sik?
If yu gɛt sɔm sayn dɛm, yu dɔktɔ go du sɔm tɛst fɔ no if yu gɛt dis sik. di men tεst dεm na fכ luk fכ di kεnsar sεl dεm εn di abnכmal ``(IgM)`` protin we de insay yu bכdi.
- bכdi εn urine tεst: dεn ya de chεk fכ lכw bכdi sεl kכnt (rεd sεl, wayt sεl, pletlet) εn abnכmal hכy lεvεl fכ di protin ``(IgM)''.
- imej tεst: dεn kin yuz tεst lεk ``CT skan'' כ ``PET skan'' fכ chεk fכ swεla limf no dεm εn כgan dεm we big lεk di liva εn splin.
- di ay egzam: Sɔntɛnde, smɔl smɔl blɔd kin kɔmɔt insay di yay, na di bak pat pan di aybɔl, bikɔs di blɔd de klɔt. Wan dɔktɔ we de mɛn yu yay kin chɛk dis.
- Bone Marrow Biopsy: Dis na di test we impɔtant pas ɔl fɔ kɔnfirm di sik. insay dis, dεn kin tek wan rili sכmכl sεmpl fכ bon mכro frכm wan ples lεk di hip bon εn dεn kin egzamin am כnda maykroskכp. Dɔn dɛn kin yuz dis fɔ no if ɛni kansa sɛl de insay.
Wetin na di tritmɛnt dɛm fɔ WM?
As wi bin dɔn tɔk, pan ɔl we dɛn nɔ go ebul fɔ mɛn dis sik ɔltogɛda, tritmɛnt dɛn de we rili fayn fɔ kɔntrol di sayn dɛm. Yu dɔktɔ go asɛs yu sik ɛn mek wan tritmɛnt plan we go fayn fɔ yu ɛn we nɔ gɛt bɛtɛ sayd ɛfɛkt.
| Di we aw dɛn kin trit am | Wetin kin apin to am? |
|---|---|
| Wachful Waitin | If yu nɔ gɛt ɛni sik, yu dɔktɔ go jɔs de wach yu we i nɔ bigin fɔ tek ɛni mɛrɛsin. Sɔm pipul dɛn kin du wɛl fɔ lɔng lɔng tɛm we dɛn nɔ gɛt ɛni tritmɛnt. |
| Plasmafεresis (plasma εkshεnj) . | Dɛn kin du dis if yu gɛt sayn dɛn we de sho se blɔd de klɔt. Wan mashin de separet di wata pat we dɛn kɔl plasma frɔm yu blɔd, pul di bad bad IgM protin, ɛn gi di plasma we dɛn dɔn klin bak to yu bɔdi. |
| Imyunotɛrapi | Dis min se yu fɔ yuz yu yon imyun sistɛm fɔ pwɛl di kansa sɛl dɛn. Di drɔg ``Rituximab`` na in dɛn kin yuz fɔ dis. |
| Kimotɛrapi | Gi drɔgs we de kil kansa sɛl dɛn. Sɔntɛnde, dɛn kin jɔyn dis wit imyunotɛrapi. |
| Tɛrapi we dɛn de tɔk bɔt | Dis na nyu kayn tritmɛnt. Dɛn mɛrɛsin ya de tɔch sɔm patikyula prɔtin dɛn we de ɛp di kansa sɛl dɛn fɔ sheb ɛn gro, ɛn dis kin mek dɛn stɔp fɔ wok. `(Ibrutinib)` ɛn `(Zanubrutinib)` na dɛn kayn drɔgs ya. |
| Stem Sɛl Transplant we dɛn kin yuz | Dis na tritmɛnt we nɔ kin apin so ɔltɛm, dɛn kin du am pan di wan dɛn nɔmɔ we dɛn dɔn pik. insay dis, dεn kin riples di bon mכro we kεnsar dεn dכn pwεl wit hεlty bon mכro. |
Aw layf go tan lɛk wit dis sik?
Bikɔs na sik we de go bifo bad bad wan, nɔto ɔlman in ɛkspiriɛns na di sem. Risach dɔn sho se 66 pan ɔl 100 pipul dɛm (dat na pas 2 pan 3) stil de alayv 10 ia afta dɛn dɔn no se dɛn gɛt dis sik. Bɔt dis kin difrɛn bay di ej. Bɔrku tɛm, pipul dɛm wae dɛn kin no afta dɛn dɔn ol 65 ia nɔr kin day frɔm WM, bɔt na ɔda kayn sik wae kin kam as dɛn de ol.
Aw yu go go bifo dipen pan bɔku tin dɛn:
- yu ej
- Di rizulyt fɔ yu blɔd tɛst ripɔt
- Di kayn jenɛtik mutation we yu gɛt
If yu gɛt ɛni kwɛstyɔn bɔt dis, tɔk to yu dɔktɔ. I sabi yu ɛn ɔltin we de afɛkt yu wɛlbɔdi bɛst.
Wetin yu go du fɔ mek yu gɛt wɛlbɔdi?
Fɔ liv wit lɔng tɛm kɔndishɔn lɛk WM kin min fɔ mek sɔm big chenj na yu layf, bɔt bɔrku tin de wae yu kin du fɔ ɛp.
- Aks yu dɔktɔ: Us it ɛn drink dɛn we fayn fɔ yu, us ɛksesaiz dɛn we fayn fɔ yu, ɛn wetin yu nid fɔ du fɔ mek yu gɛt wɛlbɔdi na yu maynd.
- Kɔnekt wit ɔda pipul dɛm: Wae yu gɛt wan sik wae nɔr kin bɔrku lɛk dis, e kin fil lɛk yu wan, lɛk "Na mi wae gɛt dis sik na di wɔl." Bɔt nɔto yu wan de. Sɔpɔt grup dɛn de fɔ pipul dɛn we gɛt dis sik. Aks yu dɔktɔ fɔ kɔnɛkt yu to wan. We yu tɔk to pipul dɛn we dɔn pas di sem tin dɛn we yu kin du, dat kin mek yu gɛt bɔku trɛnk.
Mɛsej we dɛn kin kɛr go na os
- Waldenström Macroglobulinemia (WM) na wan blɔd kansa we rili kɔmɔn, we pɔsin kin ebul fɔ kɔntrol.
- Bɔrku pipul dɛm wae dɛn kin no se gɛt dis sik nɔr kin gɛt ɛni sayn fɔs, so dɛn kin liv fayn fɔ lɔng tɛm if dɛn nɔr gɛt tritmɛnt.
- Dis nɔto sik we pɔsin kin gɛt frɔm in mama ɛn papa, so nɔ wɔri fɔ pas am to yu pikin dɛn.
- Di men gol fɔ tritmɛnt nɔto fɔ mɛn di sik, bɔt fɔ kɔntrol di sayn dɛm ɛn fɔ mek yu gɛt kwaliti layf.
- Tɔk opin wan wit yu dɔktɔ we de trit yu bɔt ɛni kwɛstyɔn, fred, ɔ dawt we yu gɛt. I go ɛp yu.
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