Essuubi eppya eri obulwadde bwa Duchenne Muscular Dystrophy (DMD): Ka tuyige ku ddagala lya Duvyzat?

Ntegedde engeri gye kiteekwa okuba nga kizitowa era nga kitiisa omusawo wo bw’akugamba nti omwana wo alina obulwadde bwa Duchenne muscular dystrophy (DMD). Buno bulwadde bwa buzaale obusinga kukwata abalenzi ne bunafuya mpolampola ebinywa. Obubonero butera okulabika mu baana abato. Tewali ddagala lyonna eriwonya DMD n’okutuusa kati. Naye teweeraliikiriranga. Sayansi w’obusawo agenda akulaakulana buli lunaku. Olw’enkulaakulana eyo, essuubi eppya lye ddagala lino eppya eriyitibwa Duvyzat. Ka tukyogereko mu ngeri ennyangu.

Duvyzat kye ki? Kikola kitya?

Mu ngeri ennyangu, ebinywa byaffe byetaaga okuddaabirizibwa buli kiseera okusobola okusigala nga binywevu. Lowooza ku binywa ebiri mu mubiri gwaffe nga biringa bbugwe w’amabaati. Bbugwe ono okukuuma nga mugumu era nga yeegasse wamu, yeetaaga layeri ennungi ey’omusenyu. Mu ngeri y’emu, okusobola okukuuma obutoffaali bwaffe obw’ebinywa nga bugumu, puloteyina ey’enjawulo eyitibwa dystrophin , eringa omusenyu, yeetaagibwa nnyo.

Duchenne muscular dystrophy (DMD) mbeera ya buzaale ebaawo ng’omubiri tegukola puloteyina ya dystrophin emala, nga tegikola kimala oba nga tegikola kimala. ‘Glue’ ono bw’abulawo, ekisenge ky’ebinywa kinafuwa, kimenyeka era tekisobola kuddaabirizibwa. Eno y’ensonga lwaki ebinywa binafuwa okumala ekiseera.

Ng’oggyeeko ekizibu kino, abaana abalina DMD balina enziyiza ezisukkiridde eziyitibwa histone deacetylases (HDACs) . Kino kireeta okuzimba okutambula obutasalako mu binywa. Kino kyongera okukendeeza ku kuddaabiriza ebinywa, era ebinywa bikyusibwamu amasavu n’enkovu.

N’okutuusa kati abasawo bakozesa eddagala eriyitibwa steroids, obujjanjabi bw’omubiri, n’ebyuma ebiyamba ng’obugaali bw’abalema okujjanjaba DMD. Naye Duvyzat lye ddagala erisooka eritali lya steroid. Kikola nga kifuga enziyiza ya HDAC ekola ennyo. Kino kikendeeza ku buzimba mu binywa ne bisobozesa okumenya. Kino kitegeeza nti sipiidi ebinywa gye binafuwa ekendeera.

Eddagala lino nkozese ntya?

Duvyzat ddagala lya mazzi ly’omira mu kamwa. Kirina okumira emirundi ebiri olunaku, ku makya n’ekiro, n’emmere .

• Kikulu nnyo okumira eddagala mu kiseera kye kimu buli lunaku .
• Nga tonnaba kukozesa ccupa ya ddagala, olina okugikankanya obulungi okumala waakiri sekondi 30 .
• Pima eddagala, ng’okozesa empiso ey’enjawulo ejja nalyo.
• Ekisinga obukulu: Eddagala lino tolitabula mu mazzi oba amazzi amalala gonna.

Omusawo ayinza okumuwa eddagala lino lyokka, oba ayinza okuliwa wamu n’eddagala eriweweeza ku bulwadde bwa steroid. Kijja kusalibwawo okusinziira ku mbeera y’omwana.

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Eby’obugagga by’eddagala lino binoonyezeddwa bitya?

Mu kunoonyereza okunene okwekenneenya obulungi n’obukuumi bw’eddagala lino, abalenzi abalina DMD baawulwamu ebibinja bibiri.

1. Ekibinja ekisooka: Baaweebwa eddagala lya Duvyzat.

2. Ekibinja 2: Baaweebwa ekintu ekiringa eddagala, naye nga tekirina kirungo kikola. Mu busawo, kino tukiyita ‘placebo’ .

Kino kikolebwa okupima ekikolwa ekituufu eky’eddagala, engeri gye lyawukana ku kubeerawo kwokka. Bonna abeetabye mu kunoonyereza kuno baali balenzi. Emyaka gyabwe egya wakati gyali gya myaka 9.

Oluvannyuma lw’okuwa obujjanjabi buno okumala wiiki 72, enkyukakyuka mu busobozi bw’abaana zaapimibwa. Kino kyakozesebwa ebigezo ebirala ebiwerako.

• North Star Ambulatory Assessment (NSAA) score: Enkola y’okupima obusobozi bw’omuntu alina DMD okukola emirimu gya buli lunaku.
• Okugezesebwa kw’okutambula okw’eddakiika mukaaga: Kulaba bbanga ly’osobola okutambula mu ddakiika 6.
• Okukebera kwa MRI: Kupima enkyukakyuka mu masavu mu binywa by’ekitundu ky’ekisambi.

Biki ebyava mu kunoonyereza kuno?

Ebyavaamu ddala bizzaamu amaanyi. DMD mbeera obubonero mwe bweyongera okumala ekiseera. Ekintu ekyali kyeyoleka bulungi mu kunoonyereza kuno kwe kuba nti omuwendo gw’okwonooneka mu baana abamira Duvyzat gwali gugenda mpola nnyo okusinga mu baana abatamira ddagala lino (the placebo) .

Kino kitegeeza nti wadde eddagala lino terisobola kuwonya bulwadde buno ddala, liyinza okukendeeza ku sipiidi y’obunafu bw’ebinywa n’okuyamba omwana okukuuma obusobozi bwe obw’okukola emirimu okumala ebbanga.

• Amaanyi n’okutambula: Obudde obwatwala okulinnya amadaala ana bweyongera sikonda 1.25 zokka oluvannyuma lwa wiiki 72 mu baana abaamira Duvyzat. Naye kyatwala sekondi nga 3 okusingawo mu baana abatamira ddagala. Ekyo kitegeeza nti Duvyzat yakendeeza ku kukendeera kw’obusobozi bwabwe obw’okulinnya amadaala ebitundu nga 40%.
• Obubinja bwa NSAA: Ku nkomerero y’okunoonyereza, okukendeera kw’obubonero bwa NSAA kwali kutono nnyo mu baana abamira Duvyzat okusinga mu abo abatamira ddagala lino. Kino era kiraga nti omutindo gw’okukendeera kw’amaanyi g’ebinywa gwakendeera.

Ebivaamu bino biyinza okwawukana ku mwana wo, n’olwekyo olina okukubaganya ebirowoozo n’omusawo wo ku migaso n’akabi akali mu ddagala lino nga tonnasalawo.

Ebizibu ebivaamu n’engeri y’okubiddukanyaamu?

Okufaananako n’eddagala lyonna, Duvyzat asobola okuba n’ebizibu ebivaamu. Kikulu okukimanya ku kino.

Buno si bwe bubonero bwokka. Bw’ofuna obubonero obulala obutali bwa bulijjo, yogerako n’omusawo wo.

Wayinza okubaawo obuzibu ku ddagala eddala?

Yee, Duvyzat asobola okukwatagana n’eddagala eddala erimu. N’olwekyo, kikulu okubuulira omusawo wo ku ddagala lyonna omwana ly’amira omuli eddagala eriwandiikiddwa omusawo, eddagala eritali ku ddagala (OTC), vitamiini, n’ebintu ebiva mu muddo.

Okusingira ddala, tegeeza omusawo wo bw’oba ​​omira eddagala lino wammanga:

• Eddagala erimu erikendeeza ku kolesterol (e.g. atorvastatin, simvastatin) .
• Eddagala lya sukaali nga metformin
• Eddagala erikosa okukuba kw’omutima (e.g. amiodarone) .
• Eddagala erimu eritta obuwuka (e.g. azithromycin, ciprofloxacin) .
• Eddagala erimu erijjanjaba endwadde z’obwongo
• Eddagala erimu eriwonya alergy

Olukalala luno terujjuvu, n’olwekyo kirungi n’obuulira omusawo wo ku buli kimu omwana wo ky’amira.