Yu tink se ivin smɔl kɔt we yu kɔt nɔ kin stɔp fɔ blɔd? Wi go tɔk bɔt ɛmofilia?

Yu mɛmba we yu bin smɔl, we yu fɔdɔm ɛn swɛt yu ni ɔ yu ɛlb, di blɔd bin jɔs stɔp afta sɔm tɛm? Yu nɔ tink se dat na wɔndaful tin? We wi de blɔd, wi bɔdi gɛt wan sistɛm fɔ stɔp am, we na wan sistɛm we de mek blɔd klɔt. Bɔt sɔm pipul dɛn de, ɛn dis we aw blɔd de klɔt nɔ de wok fayn na dɛn bɔdi. Na da tɛm de wi kin tɔk bɔt wan sik we dɛn kɔl ɛmofilia . Dis kin bi siriɔs smɔl, bɔt wit di rayt mɛnejɛmɛnt, na kɔndishɔn we dɛn kin trit fayn.

Wetin rili na ɛmofilia?

Fɔ tɔk am simpul wan, ɛmofilia na wan sik we wi blɔd nɔ kin klɔt fayn, we min se we wi de blɔd, i nɔ kin stɔp izi wan . Na mεntal jεnεtik sik , we min se i kin pas dכn tru jin dεm frכm jεnereshכn to jεnereshכn.

Imajin se yu gɛt smɔl kɔt na yu an. Nɔmal wan, sɔm prɔtin dɛn na wi blɔd we dɛn kɔl clotting factors , kin wok togɛda fɔ lɔk di wund ɛn stɔp di blɔd. I tan lɛk se yu de pat ol na wɔl.

Bɔt pan pɔsin we gɛt ɛmofilia, wan pan dɛn tin ya we de mek di bɔdi klɔt nɔ de bɔku, ɔ di tin nɔ de wok fayn. Na dat na di prɔblɛm. Dis na di rizin we mek dɛn kin blɔd fɔ lɔng tɛm ivin if dɛn wund smɔl, ɔ dɛn kin brus izi wan.

Aw blɔd kin klot simpul wan

We wi bigin fɔ blɔd, sɔm tin dɛn de we wi fɔ du fɔ stɔp am.

1. Di fɔs tin we kin apin na we di blɔd vesel dɛn kin kɔnstrikt. Dɔn di blɔd we de kɔmɔt na do kin go dɔŋ smɔl.

2. Dɔn, smɔl smɔl sɛl dɛn we dɛn kɔl pletlɛt na wi blɔd kin kam na di say we di pɔsin wund ɛn stik togɛda, ɛn mek wan kayn smɔl dɛm.

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Wetin kin apin pan ɛmofilia na dat insay dis tɔd step, wan pan di tin dɛn we de mek di bɔdi klɔt nɔ de, so dat strɔng klot nɔ de fɔm.

Sɔm kayn ɛmofilia de?

Yɛs, tu men kayn ɛmofilia de, i go dipen pan us klotin factor we nɔ de.

Ɛmofilia A

Dis na di kayn ɛmofilia we bɔku pipul dɛn kin gɛt. i kin kכz fכ we i nכ gεt inof klotin fכktכ VIII כ we i nכ de wok fayn fayn wan.

Ɛmofilia B

Dɛn kin kɔl dis kayn sik bak Krismas Sik . i kin bi bikɔs di nɔmba nayn blɔd klot factor (Factor IX) nɔ de wok fayn.I okay se nɔto inof, i okay se i nɔ de wok fayn.

Di sayn dɛm fɔ ɔl tu di kayn sik dɛn kin rili fiba. Bɔt i rili impɔtant fɔ no dɛn tu kayn ya kɔrɛkt wan we yu de trit dɛn. Bikɔs dɛn fɔ gi tritmɛnt akɔdin to di tin we dɔn go dɔŋ.

Di siriɔs tin we dis tin de apin

Di kayn we aw di ɛmofilia kin tranga kin difrɛn frɔm wan pɔsin to ɔda pɔsin, i kin dipen pan aw bɔku pan di tin we nɔ de mek di bɔdi klɔt kin de na di bɔdi.

• Mild hemophilia: Pipul dɛm wae gɛt mild hemophilia gɛt smɔl smɔl pas di nɔmal blɔd klot factors. Dɛn kin jɔs blɔd fɔ shɔt tɛm if dɛn gɛt big injuri, ɔpreshɔn, ɔ pul dɛn tut. Dɛn nɔ kin ivin no se dɛn gɛt ɛmofilia te sɔntin we siriɔs apin.
• Mɔdaret ɛmofilia: Dɛn pipul ya nɔ gɛt bɛtɛ tin dɛn we kin mek dɛn blɔd klɔt. Dɛn kin blɔd pasmak bikɔs ivin smɔl smɔl wund dɛn. Sɔntɛnde, dɛn kin blɔd fɔ natin (dɛn kin blɔd fɔ dɛnsɛf).
• Sivɛri ɛmofilia: Dɛn pipul ya nɔ gɛt bɔku bɔku tin dɛn we kin mek dɛn blɔd klɔt. Dɛn kin blɔd na dɛn jɔyn ɛn mɔsul dɛn fɔ no rizin. Ivin di smɔl smɔl brus kin mek big prɔblɛm.

Wetin mek dis kin apin? Wetin na di rizin dɛn?

Bɔku tɛm, ɛmofilia na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks , we min se i kin pas frɔm mama ɛn papa to pikin dɛn tru di jin.

Aw i kɔmɔt frɔm inhɛritɛshɔn (X-linked inheritance) .

Di jin fɔ ɛmofilia de na di X kromozom. yu no se uman gεt tu X kromozom (XX), we man gεt wan X kromozom εn wan Y kromozom (XY).

• Wan uman pikin: I kin gɛt wan X frɔm in mama ɛn wan X frɔm in papa.
• Man pikin: I kin gɛt wan X frɔm di mama ɛn wan Y frɔm di papa.

Naw, if di jin we nɔ fayn we de mek pɔsin gɛt ɛmofilia de na di X kromozom, .

• If bɔy pikin gɛt da X kromozom we nɔ fayn frɔm in mama, i go gɛt ɛmofilia. Na bikɔs na wan X kromozom nɔmɔ i gɛt. If bad tin de pan am, no ɔda X nɔ de fɔ kɔmpɛns am.
• If gyal pikin gɛt X kromozom we nɔ fayn frɔm in mama ɔ papa, bɔt i gɛt wɛlbɔdi X kromozom, i nɔ go sho di sayn dɛn. Bɔt i go bi pɔsin we de kɛr di tin dɛn . Dis min se ivin if i nɔ gɛt ɛmofilia, i kin pas di jin we nɔ fayn to in pikin dɛn. Na smɔl tɛm nɔmɔ, uman dɛn we gɛt di sik kin sho smɔl smɔl sik dɛn bak.

Na dat mek ɛmofilia kin apin mɔ pan man dɛn .

Imajin, if mama gɛt ɛmofilia, ɛvri man pikin we i bɔn gɛt 50% chans fɔ gɛt ɛmofilia. semweso, evri uman pikin gεt 50% chans fכ bi kכriכ.

Yu tink se i de rɔn na famili? (Myuteshɔn dɛn we kin apin bay dɛnsɛf) .

Nɔto ɔltɛm i kin nid fɔ mek pɔsin na di famili gɛt ɛmofilia. sכmtεm, insay lεk 30% pan di kes dεm, εmofilia kin apin lεk wan spontan mכtεshכn insay wan jin. If na so i bi, sɔntɛm nɔbɔdi nɔ go dɔn gɛt dis sik bifo.

Wetin na di sayn dɛm fɔ ɛmofilia? Aw dɛn kin no se i gɛt am?

Di sayn dɛm fɔ ɛmofilia kin difrɛn difrɛn wan bay aw di sik tranga. Di kɔmɔn sayn dɛm na:

• Big big dip brus kin apin bɔku tɛm: Ivin smɔl bɔmp kin mek big brus.
• Kɔntinyu fɔ blɔd bikɔs i wund, we dɛn pul in tut, ɔ afta dɛn dɔn ɔpreshɔn am.
• Nos blɔd fɔ no rizin.
• Di blɔd we de kɔmɔt na di gɔm.
• Blɔd we de kɔmɔt na di jɔyn (ɛmatrɔsis): Dis kin mek pɔsin fil pen bad bad wan. Di jɔyn kin swel, i kin wam, ɛn i nɔ kin ebul fɔ muv fayn. di joyn dεm lεk di ni, di εlbo, εn di ankכl dεm kin afekt mכst. As tɛm de go, dis kin mek bak di jɔyn dɛn pwɛl.
• Blɔd we de kɔmɔt na di mɔsul: Dis kin mek bak pɔsin fil pen ɛn swel.
• Blɔd we de kɔmɔt wit yu urine ɔ stɔl.
• Fɔ bebi dɛn: Sɔntɛnde di fɔs sayn na we i de blɔd ɔltɛm afta dɛn dɔn sakɔmsayz. Ɔ afta dɛn dɔn injekt am, di say kin swel bad bad wan ɛn blɔd kin kɔmɔt.
• Wan sik we rili siriɔs, bɔt we nɔ kin apin so ɔltɛm, na we blɔd de kɔmɔt na di bren. Dis kin mek yu gɛt sɔm sayn dɛm lɛk fɔ gɛt siriɔs ed pen, fɔ vɔmit, fɔ slip, ɛn fɔ gɛt sik. Dis na imejensi.

Aw dɔktɔ go no se dis na ɛmofilia? (Diagnosis) .

If yu ɔ yu pikin gɛt ɛni wan pan dɛn sik ya, di bɛst tin fɔ du na fɔ go to dɔktɔ. Bɔku tɛm, dɔktɔ go mek pɔsin no bɔt di sik bay dɛn we ya:

1. Fɔ aks bɔt famili istri: Fɔ chɛk fɔ si if ɛnibɔdi na di famili gɛt ɛmofilia ɔ ɔda prɔblɛm wit blɔd.

2. Dɛn kin du wan fyzikal ɛgzamin: Dɛn kin chɛk fɔ si if yu gɛt brus, yu jɔyn dɛn dɔn swel, ɛn ɔda tin dɛn.

3. Dɛn kin du blɔd tɛst:

• Skrin tɛst: Dɛn wan ya kin no aw lɔng i kin tek fɔ mek blɔd klɔt. fכ egzampl, tεst dεm lεk PTT (Partial Thromboplastin Time) εn PT (Prothrombin Time) . PTT valyu dɛn kin te pan ɛmofilia.
• Clotting factor assays: Dɛn kin yuz dɛn tin ya fɔ no if Factor VIII ɛn Factor IX nɔ de wok fayn, ɛn to us mak. Dɛn kin yuz dis fɔ no di kayn ɛmofilia ɛn aw i siriɔs.

Ivin we di pikin gɛt bɛlɛ, if di famili gɛt ɛmofilia, dɛn kin du tɛst fɔ si if di pikin gɛt ɛmofilia.

Wetin na di tritmɛnt dɛm fɔ dis? (Tritmɛnt)

Pan ɔl we ɛmofilia na sik we pɔsin nɔ go ebul fɔ mɛn, tritmɛnt dɛn de we rili fayn.Dɛn tritmɛnt ya kin ɛp fɔ kɔntrol ɛn nɔr blɔd, ɛn ɛp yu fɔ liv bɛtɛ layf.

Riplesmɛnt Tɛrapi

Dis na di men tritmɛnt. i involv fכ gi di bכdi wan bכdi kכlכt fכktכ (Fכktכ VIII כ Faktכ IX) we nכ de na di bכdi tru wan vein (intravenכs כ IV infushכn). Dɛn kin mek dɛn tin ya frɔm mɔtalman blɔd plasma ɔ tru jɛnɛtik tɛknɔlɔji (rikombinant prɔdak dɛm).

Dɛn kin du dis tritmɛnt tu we dɛn:

1. Prɔfylaktik tɛrapi: Insay dis, dɛn kin gi di factor to di bɔdi bɔku tɛm insay di wik, bifo blɔd kɔmɔt. Dis kin mek blɔd nɔ kɔmɔt wantɛm wantɛm, mɔ na di jɔyn dɛn. Dɛn kin du dis fɔ pipul dɛm wae gɛt siriɔs ɛmofilia.

2. On-demand therapy: Insay dis, dɛn kin gi di factor afta blɔd dɔn bigin. Dɛn kin yuse dis tritmɛnt fɔ pipul dɛm wae gɛt mild hemophilia ɛn dɛm wae nɔr de pan prɛvɛntiv tritmɛnt.

Ɔda mɛrɛsin dɛn

• Desmopressin (DDAVP): Dis na mɛrɛsin we dɛn kin yuz fɔ pipul dɛn we gɛt mild ɛmofilia A. I de wok bay we i de rilis Factor VIII we dɛn dɔn kip na di bɔdi. Dɛn kin gi am as sprɛy na yu nos ɔ as injɛkshɔn.
• Antifibrinolytic drɔgs: Fɔ ɛgzampul , tranexamic acid . Dɛn drɔgs ya kin wok bay we dɛn kin mek di blɔd we dɔn klɔt sloslo. Dɛn kin yus pan tin dɛn lɛk fɔ pul yu tut ɛn fɔ blɔd na yu nos.
• Di tin dɛn we de mek pɔsin fil pen: Yu kin tek tin dɛn lɛk paracetamol fɔ mek yu nɔ fil pen we yu de blɔd na di jɔyn dɛn. Bɔt dɛn nɔ kin yuz mɛrɛsin lɛk aspirin ɛn NSAID (e.g., ibuprofen, diclofenac) fɔ pipul dɛn we gɛt ɛmofilia, bikɔs dɛn kin mek di blɔd kɔmɔt mɔ ɛn mɔ.

Wetin yu kin du we yu de blɔd?

Sɔm tin dɛn de we yu fɔ du we yu gɛt blɔd. Mɛmba di we aw RICE bin de du am.

• R (Rɛst): Rɛst di jɔyn ɔ mɔsul we dɔn wund. Kip am fɔ mek i nɔ muf.
• I (Ays): Put ays pak na di say we yu wund fɔ lɛk 15-20 minit, bɔku tɛm insay di de. Dis go mek yu nɔ swel ɛn nɔ fil pen.
• C (Kɔmreshɔn): Rap di say we yu wund wit ɛlastik bandej fɔ mek i tayt smɔl.
• E (Elevation): Kip di an ɔ leg we wund ɔp di lɛvɛl na di at.

We yu de du dɛn tin ya, yu fɔ tɔk to yu dɔktɔ ɛn gɛt Factor tritmɛnt if nid de.

Aw fɔ liv wit ɛmofilia

Fɔ liv wit ɛmofilia kin tranga, bɔt if yu de trit yu fayn fayn wan, no bɔt am, ɛn sɔpɔt yu, yu kin liv nɔmal, aktif layf.

• Sɔpɔt frɔm wan tim we gɛt spɛshal dɔktɔ dɛn: We dɛn de trit ɛmofilia, .I rili impɔtant fɔ gɛt sɔpɔt frɔm wan tim we gɛt dɔktɔ we de mɛn blɔd, nɔs, fisiotɛrapist, ɛn soshal woka. Dɛn go advays yu bɔt tritmɛnt, ɛksesaiz, ɛn aw fɔ de sef.
• Fɔ du tin dɛn we sef: Pipul dɛn we gɛt ɛmofilia fɔ avɔyd spɔt we kin mek dɛn gɛt bɔku injury (e.g., rɔgbi, bɔksin). Bifo dat, du ɛksesaiz dɛn we sef lɛk fɔ swim, waka, ɛn bayk (wit ɛlmɛt). Tɔk to pɔsin we de mɛn yu bɔdi fɔ pik ɛksesaiz we go fayn fɔ yu.
• Mek yu tit gɛt gud wɛlbɔdi: I rili impɔtant fɔ mek yu nɔ gɛt tut rɔtin ɛn yu gɔm sik, bikɔs i kin mek yu blɔd kɔmɔt we yu de du tin dɛn lɛk fɔ pul yu tut. Kɔntinyu fɔ go to dɛntist.
• Mɛdikal alert aydentifikeshɔn: Ɔltɛm kɛr breslɛt ɔ kad we se yu gɛt ɛmofilia. I kin rili yusful if ɛnitin apin we nɔ izi fɔ du.
• Sɔshial sɔpɔt: Fɔ tɔk to ɔda pipul dɛm wae gɛt ɛmofilia ɛn dɛn famili ɛn fɔ sheb ɛkspiriɛns na big trɛnk. If dɛn kayn ɔganayzeshɔn dɛn de, jɔyn dɛn.
• Op fɔ tumara bambay: Dɛn de fɛn nyu tritmɛnt fɔ ɛmofilia ɔltɛm. Dɛn de du risach bak bɔt tin dɛn lɛk jin tɛrapi . So wi kin gɛt op fɔ tumara bambay.

Wan Mɛsej we pɔsin kin kɛr go na os

Ɛmofilia na prɔblɛm we blɔd kin klɔt, bɔt nɔto sɔntin we pɔsin fɔ fred ɛn dɛn kin ebul fɔ kɔntrol am fayn fayn wan .

Di tin we impɔtant pas ɔl na fɔ go to dɔktɔ kwik kwik wan if yu gɛt sɔm sayn dɛn, gɛt kɔrɛkt diagnosis, ɛn fala di tritmɛnt we dɛn gi yu.

If yu ɔ pɔsin we yu sabi gɛt ɛmofilia, mɛmba se nɔto yu wan de. If yu no, sɔpɔt, ɛn tritmɛnt we yu nid, yusɛf go ebul fɔ liv fayn layf, ɛn yu go ebul fɔ liv yu layf. Nɔ giv ɔp fɔ op!

` Ɛmofilia, blɔd, blɔd we de klɔt, jɛnɛtik sik, Fakta VIII, Fakta IX