Wetin na di sik we dɛn kɔl Fraser Syndrome? Lɛ wi tɔk bɔt dis sik we nɔ kin apin so ɔltɛm

Bebi we dɛn jɔs bɔn kin mek wan famili gladi pasmak. Bɔt pan di sem tɛm, i nɔmal fɔ mek yu, as mama ɔ papa, gɛt sɔm tin dɛn we de fred ɛn dawt. Sɔntɛnde, dɛn kin bɔn pikin wit wan sik we nɔ kin apin so ɔltɛm we wi nɔ ɛva yɛri bɔt. I nɔ kin izi fɔ mek wi tɔk wetin wi de fil da kayn tɛm de. Tide wi go tɔk bɔt wan pan dɛn kayn tin ya we nɔ kin apin so ɔltɛm, we kin mek pɔsin gɛt jɛnɛtiks, we na Fraser Syndrome.

Fɔs, lɛ wi si, wetin na dis jenɛtik sik?

Fɔ tɔk am simpul wan, na wi jin dɛn de kɔntrol ɔltin na wi bɔdi. Tin dɛn lɛk wi ia kɔlɔ, wi yay kɔlɔ, ɛn ayt na dɛn jin ya de sho. Sɔntɛnde, sɔm chenj dɛn, ɔ chenj dɛn kin apin na dɛn jin ya. Na da tɛm de di jenɛtik dizayd kin apin. Sɔm pan dɛn tin ya kin apin we dɛn bɔn am, ɛn ɔda wan dɛn kin apin leta.

Fraser syndrome na wan kayn sik wae de kam wit dis kayn sik wae nɔr kin bɔrku. i kin apin ali we di pikin de divεlכp na di bεlε. I kin afɛkt smɔl pipul dɛn na di wɔl. I kin apin to man ɛn uman.

Wetin na di sayn dɛm fɔ pikin we gɛt Fraser Syndrome?

De sayn dɛm fɔ dis sik kin difrɛn frɔm wan pikin to ɔda pikin. Dis min se nɔto ɔl pikin go sho di sem sik. Bɔt sɔm men ɛn ɔda sayn dɛn de we pipul dɛn kin si.

De tebul wae de dɔŋ ya de sho sɔm pan de sik wae kin kam wae pɔrsin kin si pan dis sik.

Apat frɔm dɛn sik ya, ɔda sayn dɛn kin de we nɔ kin bɔku. If yu notis ɛnitin we nɔ kɔmɔn ɔ we difrɛn na yu pikin in bɔdi, tɔk to yu dɔktɔ wantɛm wantɛm .

Wetin mek dis tin kin apin?

As wi bin dɔn tɔk bifo tɛm, dis na sik we pɔsin kin gɛt we i gɛt prɔblɛm wit in jɛnɛtiks. spεshal wan, chenj dεm na di jin dεm FRAS1, FREM2, εn GRIP1 na di men kכz dεm.

wi kכl dis patεn fכ transmishכn tru jin dεm ‘Autosomal Recessive’ . Naw lɛ wi si aw wi go ɔndastand dis simpul wan.

Imajin se yu mama ɛn yu papa ɔl tu gɛt wan kɔpi fɔ dis jin we nɔ fayn na dɛn bɔdi. Bɔt dɛn nɔ gɛt di sik, bikɔs na wan kɔpi nɔmɔ dɛn gɛt fɔ di jin we nɔ fayn. Wi de kol dem ‘carriers’.

Naw, we dɛn mama ɛn papa dɛn ya we de kɛr pikin dɛn gɛt pikin, .

• 25% (wan pan fכ) chans de fכ mek pikin gεt dis kכndyushכn (if dεn tu mama εn papa gεt di jin kכpi dεm we nכ de wok fayn).
• 50% (wan pan tu) chans de fɔ mek di pikin bi pɔsin we nɔ gɛt ɛni simptom, jɔs lɛk di mama ɛn papa.
• 25% chans de fɔ mek di pikin nɔ go gɛt dis jin we nɔ fayn atɔl ɛn i go gɛt wɛlbɔdi ɔlsay.

Dis tan lɛk we yu de flip kɔyn. Dis risk na di sem tin pan ɛvri bɛlɛ.

Aw fɔ no bɔt dis sik?

Dɛn kin no dis sik bifo dɛn bɔn di pikin, dat na we i gɛt bɛlɛ. Dɔktɔ dɛn kin sɔprayz dis if dɛn si ɛnitin we nɔ fayn na di pikin in kidni, in lɔng, ɔ in finga dɛn we dɛn de du ɔltra saund skan bitwin 18 ɛn 20 wiks. Dɔktɔ dɛn kin pe atɛnshɔn mɔ to dis, mɔ if pɔsin na di famili dɔn gɛt dis sik bifo.

Sɔntɛnde, if dɛn nɔ ebul fɔ no di skan, dɛn kin no di sik bay di bɔdi we dɛn bɔn am. Dɛn kin du jenɛtik tɛst bak fɔ kɔnfɔm di diagnosis.

Wetin wi go se bɔt di tritmɛnt ɛn di pikin in tumara bambay?

Nɔr mɛrɛsin nɔr de fɔ Fraser syndrome yet. Bɔt dat nɔ min se natin nɔ de we yu go ebul fɔ du. Di men gol fɔ tritmɛnt na fɔ kɔntrol di pikin in sik ɛn gi am di bɛst kwaliti fɔ liv.

• Ɔpreshɔn: Sɔm tin dɛn we nɔ de apin na yu bɔdi (e.g., finga dɛn we gɛt klɔb, yay we de swɛt) kin kɔrɛkt to sɔm mak bay ɔpreshɔn.
• Sɔpɔtiv Keya: Dis na di tin we impɔtant pas ɔl. Di pikin nid di savis fɔ wan mɛdikal tim we gɛt difrɛn spɛshal pipul dɛn. Fɔ ɛgzampul, wan dɔktɔ we de mɛn pikin dɛn, wan dɔktɔ we de mɛn di pikin dɛn we de na di bɔdi, ɛn wan dɔktɔ we de mɛn di yay kin wok togɛda fɔ mek wan tritmɛnt fɔ di pikin.

Aw di pikin de liv lɔng kin dipen pan aw di sik kin tranga. If dɛn gɛt siriɔs prɔblɛm wit dɛn respiratory ɔ kidni , sɔm pikin dɛn kin gɛt bad bad risk fɔ day insay di fɔs ia na dɛn layf. Bɔt bɔku pikin dɛn we nɔ gɛt siriɔs prɔblɛm kin liv nɔmal layf .

Jɛnɛtik advays rili impɔtant pan tin dɛn lɛk dis. I kin ɛp yu fɔ ɔndastand di sik, di prɔblɛm dɛn we kin apin to ɔda pipul dɛn na yu famili, ɛn di bɛlɛ we yu go gɛt tumara bambay. Aks yu dɔktɔ bɔt dis.