No mata aw yu smɔl pikin it, i se, "A nɔ ful, a want mɔ?" Yu dɔn ɛva si am de tink bɔt it ɔltɛm, de luk fɔ it, ɛn sɔntɛnde i de slip it we nɔbɔdi nɔ de nia am? Dis kin bi big prɔblɛm ɛn mek mama ɔ papa we si am, at pwɛl. Bɔku tɛm, wi kin tink se dis na tin we pikin want fɔ it. Bɔt nɔto so i kin bi ɔltɛm. Di tin we kin mek dis angri pasmak kin bi wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Prader-Willi Syndrome . Tide, wi go tɔk bɔt dis, di angri pasmak we kin kam wit am (`hyperphagia`), ɛn in tritmɛnt insay wan simpul ɛn padi we.
Wetin na di sik we dɛn kɔl Prader-Willi Syndrome?
Fɔ tɔk am simpul wan, Prader-Willi Syndrome na wan sik we nɔ kin apin so ɔltɛm we wi DNA chenj. Sɔntɛnde, i kin kam bak bikɔs i gɛt bad bad injury na in ed.
Dis sik kin afɛkt mɔ di haypothalamus, we na wan pat pan wi bren. Tink bɔt di haypothalamus as swich na wi bɔdi. We wi it ɛn fil ful, dis pat kin sɛn signal to wi se "Okay, enough is enough." Bɔt na pɔsin we gɛt Prader-Willi Syndrome in bren, dis "switch" nɔ de wok fayn. So, ilɛk ɔmɔs it dɛn it, dɛn nɔ kin fil se dɛn ful-ɔp.
Dis na di rizin we mek dɛn pikin ya kin angri ɔltɛm. Nɔto dɛn fɔlt, ɛn nɔto gridi. Na pat pan di sik insɛf.
Bikɔs ɔf dis angri ɔltɛm (`hyperphagia`), dɛn kin de luk fɔ it ɔltɛm.
- Dɛn kin it bɔku bɔku it pas di ɔdinari pɔsin.
- Dɛn kin ayd it fɔ it leta.
- Sɔntɛnde, yu kin want fɔ it tin dɛn we dɛn dɔn frɔz, sɔntɛm ivin it tin dɛn we kɔmɔt na di dɔti.
If dɛn nɔ kɔntrol dis sik, di risk fɔ gɛt fat ɛn ɔda wɛlbɔdi prɔblɛm dɛn we gɛt fɔ du wit am (lɛk dayabitis ɛn at sik) kin rili bɔku.
Yu tink se tritmɛnt de fɔ dis angri we pasmak?
Yɛs. Mɛrɛsin dɛn de we kin ɛp fɔ kɔntrol dis angri pasmak. Vykat XR (diazoxide choline) na wan pan dɛn kayn mɛrɛsin ya. Dis mɛrɛsin de wok bay we i de afɛkt di ɔmon ɛn nyurotransmit dɛn na wi bren we de kɔntrol angri ɛn apɛtit, ɛn dis de ridyus da filin de ɔltɛm fɔ angri.
Bɔt dis nɔto mɛrɛsin we pɔsin kin tek fɔ insɛf. Dis tritmɛnt fɔ jɔs stat ɔnda di sɔpɔtishɔn fɔ spɛshal pɔsin.
Aw yu kin yuz dis mɛrɛsin?
Dis na pil we dɛn kin tek wan tɛm insay di de. Yu kin tek am wit it ɔ atɔl am. Bɔt , yu fɔ swɛla di tablɛt ɔl we yu nɔ brok, krɔs, ɔ chew.
Yu dɔktɔ go bigin yu fɔ tek dis mɛrɛsin pan wan rili smɔl doz. Dɔn, ɛvri tu wik, dɛn go inkrisayz di doz smɔl smɔl. Dɛn kɔl dis `taytreshɔn.' Dɛn kin du dis fɔ fɛn di mentenɛns doz wae de woke fɔ yu ɛn wae de kɔntrol yu sik dɛn fayn fayn wan. If yu nɔ ebul fɔ tek di mɛrɛsin fɔ wan wik ɔ mɔ, yu dɔktɔ kin bigin yu fɔ tek smɔl doz bak ɛn i kin ad am smɔl smɔl.
Aw yu go no if di mɛrɛsin de wok?
As dis mɛrɛsin bigin fɔ wok, yu ɔ yu pikin go notis se tin dɛn lɛk fɔ it ɔltɛm, fɔ want fɔ it, ɛn fɔ angri pasmak go stɔp smɔl smɔl. Bikɔs i kin tek sɔm tɛm fɔ mek dis mɛrɛsin bigin fɔ wok, nɔ ɛkspɛkt big chenj insay di fɔs wik.
Bɔt if yu apɛtit stil nɔ de bɛtɛ pan ɔl we yu de tek di mɛrɛsin, mek shɔ se yu tɔk to yu dɔktɔ bɔt am. I kin ebul fɔ stɔp di mɛrɛsin ɔ tɔk bɔt ɔda tritmɛnt if nid de.
Wetin na di sayd ɛfɛkt dɛm wae kin pasmak ɛn wetin dɛn kin du bɔt dɛm?
Lɛk ɛni mɛrɛsin, i kin mek pɔsin gɛt sayd ɛfɛkt. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi luk di sayd ɛfɛkt dɛm wae kin mɔna ɛn aw fɔ mɛn dɛn.
| Sayd Ifɛkt we i kin gɛt | Aw fɔ manej |
|---|---|
| Di bɔdi ia we de gro pasmak (haypertrichosis) . | Bɔku tɛm, pɔsin kin ebul fɔ kɔntrol dis. Yu kin yuz we dɛn fɔ pul yu ia if nid de. Bɔt if i tu nɔ izi fɔ kɔntrol, tɔk to yu dɔktɔ. |
| Swɛlin bikɔs ɔf wata we de gɛda na di bɔdi (ɛdima) . | If yu gɛt sɔm sayn dɛn lɛk fɔ swel na yu leg, yu anklɛ, ɔ yu fut, ɔ yu nɔ ebul fɔ blo , tɛl yu dɔktɔ wantɛm wantɛm . Yu dɔktɔ go nid fɔ stɔp di mɛrɛsin fɔ sɔm tɛm, ridyus di doz, ɔ gi yu ɔda mɛrɛsin dɛn lɛk diuretics. |
| Di shuga na di blɔd we de go ɔp | Dis na sɔntin we wi fɔ no bɔt. Yu dɔktɔ go chɛk yu blɔd shuga lɛvɛl ɔltɛm bifo yu bigin fɔ tek di mɛrɛsin ɛn we yu de tek am. If nid de, dɛn kin gi yu ɔda mɛrɛsin dɛn fɔ ɛp yu fɔ kɔntrol yu blɔd shuga. |
| Skin Rash we de rash | Yuz sop dɛn we nɔ gɛt sɛnt ɛn we nɔ gɛt bɛtɛ swɛt. If i it, dɛn kin put ɔntmɛnt lɛk aw dɔktɔ tɛl am. If di it de bɔku ɔ i nɔ stɔp, tɛl yu dɔktɔ. |
Sivɛri kɔndishɔn dɛn we nid spɛshal kia!
Dɛn dɔn tɛl wi se dis mɛrɛsin kin mek di blɔd shuga bɔku. Sɔntɛm, dis kin mek yu gɛt wan sik we rili denja we dɛn kɔl Dayabitik Kɛtoacidosis (DKA) . dis na we di bad tin dεm we dεn kכl kεtכn de bכku na di bכdi biכs di bכdi nכ gεt inof insulin. Dis na mɛdikal imejensi.
Di sayn dɛn we de sho se yu gɛt bɔku shuga:
- Fɔ fil se yu tɔsti pasmak
- Fɔ pis bɔku tɛm
- Fɔ fil angri pas aw i kin fil
- We yu nɔ bin want fɔ lɔs yu wet
Wonin sayn dɛm fɔ Dayabitik Kɛtoacidosis (DKA):
- Nɔs ɔ vɔmit
- Bɛlɛ de at
- Taya pasmak ɔ kɔnfyushɔn
- I nɔ kin izi fɔ yu fɔ blo
- Fruity smell pan di briz
- fכ gεt rili hכy bכdi shuga lεvεl (e.g., pas 300 mg/dL) .
If yu gɛt ɛni wan pan dɛn sayn ya, go to dɔktɔ wantɛm wantɛm ɛn nɔ de te. Ɔ, go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu. Dis rili impɔtant.
Yu fɔ no bɔt aw i de miks wit ɔda mɛrɛsin dɛn.
Ɔda mɛrɛsin dɛn we yu kin tek kin afɛkt di we aw Vykat XR de wok. Sɔm mɛrɛsin dɛn kin mek di sayd ɛfɛkt dɛn we Vykat XR gɛt, ɛn ɔda wan dɛn kin mek i nɔ wok fayn.
So, tɛl yu dɔktɔ klia wan bɔt ɔl di mɛrɛsin dɛn we yu ɔ yu pikin de tek (inklud di mɛrɛsin dɛn we dɛn kin gi yu, di mɛrɛsin dɛn we dɛn kin bay na kɔt, vaytamɛn dɛn, tradishɔnal mɛrɛsin dɛn, ɛbul prɔdak dɛn). I go ajɔst di doz ɔ chenj di mɛrɛsin if nid de. Nɔ bigin ɔ stɔp ɛni mɛrɛsin we yu nɔ aks yu dɔktɔ.
Mɛsej we dɛn kin kɛr go na os
- Prader-Willi Syndrome na wan sik wae nɔr kin bɔrku pan jɛnɛtiks wae kin mek pɔrsin nɔr kin fil fayn.
- Ɔndastand se di angri we yu pikin de angri pasmak ɛn fɔ fɛn it nɔto in fɔlt, bɔt na sayn fɔ di sik insɛf.
- Mεdikeshכn dεm lεk Vykat XR kin kכntrכl dis pasmak angri, bכt dεn f כ du am כltεm כnli כnda di sכpכshכn כf spεshal .
- Ɔltɛm no bɔt di bad tin dɛn we kin apin to yu, mɔ di sayn dɛn we de sho se yu gɛt bɔku blɔd shuga. If yu gɛt sɔm sayn dɛm fɔ Dayabitik Kɛtoacidosis (DKA), go to ɔspitul in Imejɛnsi Dipatmɛnt (ETU) wantɛm wantɛm.
- I rili impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin ɛn sɔpɔtmɛnt dɛn we yu de tek.
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