Yu kin jɔs fil se yu an ɛn fut de swɛt ɔ yu de swɛt? Ɔ yu gɛt mɔsul dɛn we wik ɛn i nɔ kin izi fɔ yu fɔ waka? Sɔmtɛm, dɛn kayn sik ya kin kam wit wan sik wae nɔr kin bɔrku wae wi nɔr dɔn yɛri bɔt yet. Tide, wi go tɔk bɔt wan pan dɛn kayn sik ya ɛn wan nyu tritmɛnt fɔ am.
Wetin na hATTR? Aw Amvuttra de wok?
Fɔ tɔk am simpul wan, hATTR (Hereditary Transthyretin-Mediated Amyloidosis) na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa. I de pan wan grup fɔ sik dɛn we dɛn kɔl amyloidosis. Insay dɛn sik ya, sɔm prɔtin dɛn we de na wi bɔdi kin chenj dɛn shep, dɛn kin gɛda di we dɛn we nɔ fayn, ɛn dɛn kin put dɛn na difrɛn pat dɛn.
insay hATTR sik, wan protin we dεn kכl Transthyretin (TTR) de dכn dis we. TTR na rili gud protin we de mek na wi liva ɛn i de ɛp fɔ transpɔt tayroyd ɔmon ɛn vaytamɛn A ɔlsay na di bɔdi. כltu, pכsin we gεt hATTR sik gεt sכm chenj na di TTR jin, dat na, mכtεshכn. dis de mek di TTR protin we dεn de prodyuz de insay di rכng shep. Dis protin we nɔ shep fayn kin gɛda ɛn i kin de na say dɛn lɛk di nɛv dɛn, di at, ɛn di dijestiv sistɛm as dipɔsit dɛn we dɛn kɔl amyloid .
We dɛn dipɔsit ya gɛda rawnd di nerv dɛn, dɛn kin pwɛl. Wi kin kɔl dis polyneuropathy . Na da tɛm de de sayn dɛm wae wi bin dɔn tɔk bɔt, lɛk wae yu de inflamɛns, yu nɔr de fil fayn, yu de fil pen, ɛn yu nɔr kin ebul fɔ waka .
Di impɔtant tin na dat ivin if yu gɛt di jin we gɛt fɔ du wit dis sik frɔm yu famili mɛmba, i nɔ min se yu go rili gɛt hATTR sik.
di drog Amvuttra de wok bay we i de ridyus di amoun fכ dis abnכmal TTR protin we di liva de prodyuz. dis de ridyus di akyumuleshכn fכ di amyloid dεposit dεm na di bכdi, we de εp fכ kכntrכl di simptom dεm εn fכ mek di sik nכ de bכku כ delay.
| Kɔmɔn simptom dɛm wae dɛn kin si pan hATTR sik | |
|---|---|
| Di Simptom dɛn we gɛt fɔ du wit di nerve | |
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| Di simptom dɛm we de sho se pɔsin de digest | |
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| Ɔda Kɔmɔn Simptom dɛn | |
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Yu dɔktɔ go tɛl yu bak se yu fɔ chenj di we aw yu de it ɛn ɛksesaiz, wit aw fɔ trit yu sik dɛn. Te to dis biɛn tɛm, di wangren tritmɛnt we dɛn bin de yuz fɔ dis sik na fɔ kɔntrol di sayn dɛn ɛn if nid de, fɔ transplant liva ɔ at. Bɔt di mɔdan drɔgs lɛk Amvuttra naw de alaw yu fɔ kɔntrol di sik bay we dɛn de ridyus di TTR protin, we na di ɔndalayn kɔz fɔ di sik.
Aw yu kin yuz dis mɛrɛsin?
Amvuttra na injɛkshɔn we dɛn kin gi ɔnda di skin . Na pɔsin we sabi bɔt wɛlbɔdi biznɛs kin gi am, lɛk dɔktɔ ɔ nɔs we dɔn tren. Dɛn kin gi am 4 tɛm insay di ia (ɛvri tri mɔnt) . Yu kin arenj fɔ gɛt di vaysin na yu dɔktɔ in ɔfis, na klinik, ɔ ivin na os.
Aw dɛn dɔn du risach bɔt dis mɛrɛsin?
Lɛk ɛni nyu mɛrɛsin, dɛn dɔn tɛst Amvuttra na klinik trial fɔ no if i wok ɛn i nɔ bad. Insay dis trayal, dɛn kɔmpia wan grup we gɛt Amvuttra wit wan grup we gɛt plasɛbo , we na dɔmi tritmɛnt we nɔ gɛt ɛni aktif ingridiɛnt. Dis na aw wi kin no if di mɛrɛsin rili wok.
Di stכdi inklud pasεnshכn dεm wit hATTR sik εn di rizultant polyneuropathy. Dɛn bin yuz spɛshal skɔring sistɛm dɛn fɔ mɛzhɔ dɛn nerve wiknɛs, mɔsul trɛnk, ɛn ebul fɔ du ɛvride aktiviti dɛn.
Akɔdin to di rizɔlt fɔ di stɔdi, di pasɛnt dɛn we bin gɛt Amvuttra bin impɔtant dɛn nyurolɔjik wok ɛn kwaliti fɔ layf. Pan ɔl we dɛn nyurolɔjik skɔ bin de dɔŋ ɛn di simptom dɛn bin impɔtant, di wan dɛn we bin gɛt di plasɛbo bin gɛt inkris pan di simptom dɛn.
Bɔt mɛmba se, di tin dɛn we dɛn stɔdi ya nɔ go bi di sem fɔ ɔlman. Yu fɔ tɔk to yu dɔktɔ if dis mɛrɛsin fayn fɔ yu ɛn if di bɛnifit dɛn pas di prɔblɛm dɛn we i go gɛt.
Ustɛm a go bigin fɔ fil di tin dɛn we di mɛrɛsin de du?
Dis nɔto tin fɔ sɔlv kwik kwik wan. As di mɛrɛsin de bigin fɔ wok na yu bɔdi smɔl smɔl, yu go notis se yu sik dɛn de go dɔŋ ɔ sɔm tɛm de go bifo insay sɔm mɔnt . Di gol fɔ dis tritmɛnt fɔ lɔng tɛm na fɔ kɔntrol aw di sik de go bifo. So, e fayn fɔ kip yu yay pan yu sayn dɛm.
Tɛl yu dɔktɔ fɔ wach dɛn tin ya:
- Di ebul fɔ waka we pɔsin nɔ gɛt ɛnibɔdi fɔ ɛp am
- Di an ɛn fut dɛn kin swɛla ɛn tingling
- Di tin dɛn we di bɔdi de riflɛs
- Fɔ kɔntrol blɔd prɛshɔn we yu tinap
Ivin if yu nɔ notis chenj kwik kwik wan, nɔ mis fɔ gɛt yu vaysin dɛn di rayt tɛm. Yu dɔktɔ kin du difrɛn blɔd tɛst, skan, ɔ fɔ chɛk yu bɔdi bak fɔ no aw yu de go bifo.
Sayd ɛfɛkt ɛn aw fɔ mɛn dɛn?
Di sayd ɛfɛkt dɛm we dɛn kin si wit Amvuttra na:
- Pen na yu an ɔ yu fut
- Pen na di jɔyn dɛn
- I nɔ kin izi fɔ yu fɔ blo
Apat frɔm dat, Amvuttra kin ridyus yu vaytamɛn A lɛvɛl . So, yu dɔktɔ go du yu blɔd tɛst fɔ chɛk yu vaytamɛn A lɛvɛl bifo ɛn we yu de trit yu. If yu notis ɛni chenj na yu yay, mɔ di prɔblɛm dɛn we yu gɛt na nɛt , tɛl yu dɔktɔ wantɛm wantɛm.
Nɔto dɛn wan ya nɔmɔ kin gɛt di bad tin dɛn we kin apin to pɔsin. If yu gɛt ɛni nyu sayn we de mek yu nɔ fil fayn, tɛl yu dɔktɔ wantɛm wantɛm.
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Dɛn nɔ no se amvuttra kin mek ɛni impɔtant intarakshɔn wit ɔda it, drink, ɔ mɛrɛsin. Bɔt i bɛtɛ fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn, vaytamɛn dɛn, ɛbul prɔdak dɛn, ɛn sɔpɔtmɛnt dɛn we yu de tek.
Mɛsej we dɛn kin kɛr go na os
- hATTR na wan rare, inherited kכndyushכn we de damej di nerv dεm.
- Amvuttra na wan mɔdan tritmɛnt wae de ɛp fɔ kɔntrol aw dis sik de go bifo.
- Dis na vaysin we pɔsin we sabi bɔt wɛlbɔdi biznɛs kin gi ɛvri tri mɔnt.
- Bifo yu bigin fɔ trit yu, tɔk to yu dɔktɔ bɔt di gud ɛn bad tin dɛn.
- I rili impɔtant fɔ wach di vaytamɛn A lɛvɛl we yu de du tritmɛnt ɛn fɔ tɛl di dɔktɔ wantɛm wantɛm if ɛni chenj de na di we aw yu de si.
- Tɛl yu dɔktɔ wantɛm wantɛm bɔt ɛni sayd ɛfɛkt ɔ diskɔmfɔt.
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