Yu pikin gɛt dɛn strenj sayn ya? Lɛ wi lan bɔt lɔng chen fεt asid ɔksidɛshɔn disɔda (LC-FAODs).

Yu smɔl pikin kin taya afta i dɔn ple fɔ sɔm tɛm? Ɔ i kin tan lɛk se i sik ɔltɛm, i nɔ want fɔ it, ɔ i de slip? Sɔntɛnde wi kin tink se dɛn tin ya na nɔmal tin, bɔt biɛn dis kin bi wan tin we nɔ kin apin so ɔltɛm, bɔt we rili siriɔs. Tide wi de tɔk bɔt wan pan dɛn kayn tin ya, we na Long-Chain Fatty Acid Oxidation Disorders, ɔ LC-FAODs .

Fɔ tɔk am simpul wan, wetin na dɛn LC-FAOD ya?

Dis na smɔl kɔmplikɛt nem, bɔt lɛ wi kip am simpul. Wi bɔdi tan lɛk motoka. I nid ɛnaji ɔ fiul fɔ mek i ebul fɔ wok. Di it we wi de it na di fiul fɔ wi bɔdi. di prכsεs we dis it de kכnvכlt to enεji dεn kכl am mεtabolism .

di it dεm we wi de it, lεk כ liv כyl , fish , avokado, εn mit, gεt sכmtin we dεn kכl ‘fεt asid’. Dɛn tin ya na gud tin fɔ mek di bɔdi gɛt trɛnk. Bɔku kayn fat asid ya de. pan dεm, di tכp we dεn kכl ‘lכng chen fεt asid' nid spεshal εnzym fכ kכnvכlt dεm to enεji.

di pikin dεm we dεn bכn wit wan jεnεtik kכndishכn we dεn kכl LC-FAOD dεm nכ gεt da patikyula εnzym de na dεn bכdi. So dεn bכdi nכ kin kכnvכlt dεn lכng chen fεt asid dεm to enεji.

Wetin kin apin da tɛm de?

1. Impɔtant ɔgan dɛn lɛk di at , di bren, di liva , ɛn di mɔsul dɛn nɔ de gɛt di ɛnaji we dɛn nid.

2. Fεt asid dεm we nכ kin kכnvכlt to enεji de kכmכt na dεn כgan dεm de εn bigin fכ pwεl dεm.

Dis kin mek yu gɛt siriɔs prɔblɛm dɛn lɛk at sik , liva we nɔ de wok fayn , ɛn we yu blɔd shuga nɔ de bɔku . So, i rili impɔtant fɔ no dis sik kwik kwik wan ɛn fɔ kɔntrol di it we yu de it di rayt we .

Wetin na di sayn dɛm fɔ dis sik?

Di sayn dɛm kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. I dipen pan di kayn ɛnzaym we nɔ de ɛn aw di sik siriɔs. Sɔm pipul dɛn nɔ kin sho ɛni sayn te dɛn yɔŋ ɔ big. Bɔt if i rili bad, di sayn dɛn kin bigin fɔ sho insay di fɔs mɔnt dɛn we pɔsin de liv.

di fכs sayn dεm fכ di at mכsul sik na di nyu bכbi dεm na ``cardiomyopathy``. Dis kin min se i nɔ kin izi fɔ blo, i nɔ kin izi fɔ it, ɛn i kin slip pasmak. Bebi ɛn smɔl pikin dɛn kin sho fɔs sayn dɛn fɔ gɛt prɔblɛm wit dɛn liva, lɛk we dɛn yay ɛn dɛn skin kin yɔlɔ (jaundice), ɛn we di blɔd shuga nɔ bɔku (hypoglycemia).

Lɛ wi tek wan luk pan de men tin wae kin apun pan dis ɛn wetin na di sayn dɛm wae gɛt fɔ du wit dɛm.

Wetin kin mek pɔsin gɛt dis sik?

Dis na sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dat min se, na frɔm mama ɛn papa dɛn kin gɛt am to pikin dɛn. Fɔ tɔk am simpul wan, di tin we kin mek i apin na wan chenj we de apin na di jin we de sho aw fɔ mek di ɛnzaym we de brok di fat asid dɛn we wi bin tɔk bɔt.

Fɔ mek pikin gɛt dis sik, dɛn fɔ gɛt wan kɔpi fɔ di jin we nɔ fayn frɔm in mama ɛn papa ɔl tu . if dεn gεt am frכm wan mama εn papa nכmכ, di pikin na ``kכriכ''. Dɛn nɔ go gɛt di sik, bɔt dɛn kin pas di jin to dɛn pikin dɛn.

Dis nɔto sik we pɔsin kin pas. I nɔ go ebul fɔ pas frɔm wan pɔsin to ɔda pɔsin ɛni we.

Aw fɔ no di sik?

Insay bɔku kɔntri dɛn, dɛn kin chɛk ɛni pikin we dɛn jɔs bɔn fɔ si if dɛn gɛt dɛn sik ya we dɛn kin gɛt. dis kin bi wit sכm sכm bכdi sεmpl we dεn tek frכm di il insay 1-2 dez afta dεn bכn am. If dis tɛst gi sɔntin fɔ no bɔt di sik, dɛn kin du ɔda tɛst fɔ no if pɔsin gɛt di sik.

Di men tɛst dɛn we dɛn kin du fɔ dis na:

• Blɔd ɛn urine tɛst: Dɛn tin ya de chɛk fɔ si if di fat asid ɛn ɔda tin dɛn we de na di blɔd ɛn urine gɛt bɔku bɔku tin dɛn we nɔmal.
• Jεnεtik tεst: Dis na di כnli we fכ difinitivli fכ no if yu gεt LC-FAODS εn, if na so, us kayn.

If yu pikin gɛt di sik dɛn we wi bin dɔn tɔk bɔt, i rili impɔtant fɔ go to dɔktɔ we de mɛn pikin dɛn wantɛm wantɛm fɔ tɔk bɔt dis.

Aw dɛn kin trit am?

Pan ɔl we dɛn nɔ go ebul fɔ mɛn dis sik ɔltogɛda, if dɛn tek am di rayt we , dɛn kin avɔyd siriɔs prɔblɛm dɛn ɛn liv nɔmal layf. Di men tritmɛnt dɛn na fɔ chenj di it we dɛn de it, fɔ gi spɛshal it dɛn, ɛn fɔ chenj di we aw pɔsin de liv in layf.

1. Di it we yu de it

Dis na di tin we impɔtant pas ɔl. Dis it fɔ bi ɔnda di advays we pɔsin we sabi bɔt it go gi am.

• Limit it dɛn we gɛt bɔku lɔng chen fat asid: Fɔ it lɛk mit, sɔm vɛjitebul ɔyl, nɛt, ɛn fish fɔ smɔl.
• It mɔ it dɛn we gɛt bɔku kabɔhaydrɛt: Fɔ mek yu gɛt trɛnk, yu fɔ put it dɛn we gɛt bɔku kabɔhaydrɛt lɛk rays, pɔt, ɛn swit pata pan yu it.
• It smɔl smɔl it dɛn ɔltɛm: I impɔtant fɔ it ɔltɛm ɔl di de fɔ mek di shuga na yu blɔd nɔ chenj.
• Nɔ fast: I nɔ fayn fɔ angri fɔ pas 8 awa.

2. Nutritional supliment dɛn

Bikɔs dɛn sik pipul ya nɔ kin ebul fɔ yuz lɔng chen fat asid, dɛn kin gi dɛn ɔda kayn fat we di bɔdi kin chenj to ɛnaji izi wan. Dɛn kɔl dɛn tin ya midul-chen triglisɛrɛyd (MCT) . Dɛn tin ya de as MCT ɔyl. dεn ad dεn MCT dεm ya bak to sכm bεlε fכmula dεm. Yu dɔktɔ go gi yu mɔ infɔmeshɔn bɔt dis.

3. Mɛrɛsin

Dɛn dɔn gri fɔ wan mɛrɛsin we dɛn kɔl Triheptanoin (Dojolvi) fɔ LC-FAOD dɛn. I de nɔmɔ wit yu dɔktɔ in prɛskrishɔn .

4. Di we aw pɔsin de liv in layf

I impɔtant fɔ avɔyd tin dɛn we kin mek di sik wɔs.

• Nɔ du ɛksɛsayz pasmak: Nɔ du tin dɛn we go mek di bɔdi fil taya pasmak.
• Manej di strɛs: Tin dɛn lɛk yoga ɛn meditashɔn kin ɛp.
• Protɛkt yusɛf frɔm sik: Gɛt ɔl di vaysin dɛn we yu dɔktɔ tɛl yu fɔ gi yu di rayt tɛm. Go to tritmɛnt kwik kwik wan fɔ ivin smɔl kol ɔ fiva.

Fɔ liv wit dis sik na prɔblɛm?

Na tru se, yɛs. Dis na sik we pɔsin kin gɛt fɔ ɔl in layf ɛn we pɔsin fɔ kɔntrol. Yu nid fɔ tek tɛm wit di tin dɛn we yu de it. Yu nid fɔ no wetin fɔ du we ɛnitin apin we nɔ izi fɔ yu. Dis kin mek di pikin ɛn in mama ɛn papa strɛs na in maynd.

Dat mek,

• Lan bɔt dis sik gud gud wan: no na di pawa we pas ɔl.
• Sik saykilɔjik sɔpɔt: Nɔr shem fɔ aks fɔ ɛp frɔm yu fambul, padi, ɔr pɔsin we de gi advays bɔt yu maynd.
• Stay in kɔntakt wit yu dɔktɔ: Aks am if yu gɛt ɛni kwɛstyɔn ɔ tin we de mɔna yu.

Pan ɔl we dis sik nɔ kin bɔku, if dɛn de kia fɔ di pikin fayn fayn wan ɛn kia fɔ am, i kin gɛt gud layf. Di tin we impɔtant pas ɔl na fɔ no di sik kwik kwik wan ɛn fala wetin di dɔktɔ tɛl yu fɔ du.