Elivaldogene Autotemcel (SKYSONA) - Tiyeni tiphunzire za chithandizo chapadera cha matenda osowa kwambiri muubongo

Lero tikambirana za chithandizo chamankhwala chovuta koma chamakono chomwe anthu ambiri sanamvepo. Dzina lake ndi Elivaldogene Autotemcel. Chimagulitsidwa pansi pa dzina lakuti SKYSONA. Ichi si piritsi wamba kapena kapisozi. Ichi ndi chithandizo chapadera cha matenda osowa kwambiri komanso oopsa a mitsempha otchedwa cerebral adrenoleukodystrophy (CALD). Tiyeni tifotokoze chithandizochi m'njira yosavuta yomwe mungamvetse.

Kodi kwenikweni chimachitika ndi mankhwala awa ndi chiyani?

Kuti timvetse izi, tiyeni titenge chitsanzo chaching'ono. Tangoganizani kuti maselo amitsempha muubongo ndi msana wathu ali ngati mawaya amagetsi. Mawaya amagetsi awa ali ndi chivundikiro chapulasitiki (choteteza) chozungulira iwo, chomwe chimathandiza magetsi kuyenda bwino popanda kutuluka. Mofananamo, maselo athu amitsempha alinso ndi chivundikiro choteteza chotchedwa 'myelin' chozungulira iwo. Chivundikirochi ndi chomwe chimalola mauthenga amitsempha kuyenda mwachangu komanso molondola.

Mu matenda otchedwa cerebral adrenoleukodystrophy (CALD), vuto la majini limalepheretsa thupi kupanga mapuloteni ofunikira kuti likhale ndi chigoba cha 'myelin' ichi. Chigoba chotetezachi chimawonongeka pang'onopang'ono, zomwe zimawononga magwiridwe antchito a mitsempha.

Mwachidule, chithandizochi, chotchedwa Elivaldogene Autotemcel, chimaphatikizapo kutenga maselo m'thupi la wodwalayo, kuwasintha majini mu labu, ndikuwapatsa mphamvu yopangira mapuloteni omwe akusowa. Maselo osinthidwawo amabwezeretsedwanso m'thupi la wodwalayo. Izi zimatchedwanso kuti gene therapy . Izi zimathandiza kuchepetsa kuipiraipira kwa zizindikiro.

Zinthu zomwe dokotala wanu ayenera kudziwa asanayambe chithandizo ichi

Popeza chithandizochi ndi chovuta kwambiri, ndikofunikira kuti gulu lanu lachipatala lidziwe bwino za thanzi lanu. Musanayambe chithandizo, muyenera kuuza dokotala wanu ngati muli ndi vuto lililonse mwa izi:

• Ngati muli ndi matenda aliwonse (monga malungo, chimfine, chifuwa).
• Ngati muli ndi ziwengo ndi mankhwala awa (elivaldogene autotemcel), mankhwala ena, zakudya, utoto, kapena zosungira.
• Ngati muli ndi pakati kapena mukufuna kutenga mimba .
• Ngati mukuyamwitsa mwana wanu .

Kodi chithandizochi chimaperekedwa bwanji?

Iyi si njira yochizira kunyumba. Chithandizochi chimaperekedwa kuchipatala kapena ku chipatala chapadera ndi gulu lachipatala lophunzitsidwa bwino.

Musanalandire chithandizo, mudzapatsidwa kabuku kapadera kodziwitsa anthu za mankhwalawa kotchedwa MedGuide . Kali ndi zambiri zofunika zokhudza mankhwalawa, njira yake komanso zoopsa zake. Ndikofunikira kwambiri kuwerenga ndi kumvetsetsa mosamala.

Mankhwalawa amaperekedwanso kwa ana azaka zopitirira 4, koma njira zodzitetezera zapadera ndi zofunikira zimaganiziridwa.

Nanga bwanji ngati mwamwa mankhwala ochulukirapo?

Popeza izi zimaperekedwa motsogozedwa ndi dokotala kuchipatala, mwayi woti izi zichitike ndi wochepa kwambiri. Komabe, ngati pali kukayika kulikonse kuti izi zachitika, National Poisons Information Centre ku Colombo National Hospital kapena Emergency Treatment Unit (ETU) ya chipatalacho iyenera kudziwitsidwa nthawi yomweyo.

Zinthu zofunika kuziganizira panthawi ya chithandizo komanso pambuyo pake

Mukalandira chithandizochi, madokotala nthawi zonse amawunika thanzi lanu. Pachifukwa ichi, muyenera kusamalira zinthu zinazake.

• Kuyeza Magazi: Mukamaliza kulandira chithandizo, muyenera kuyezetsa magazi anu nthawi zonse. Izi zidzakuthandizani kuona ngati chithandizocho chikugwira ntchito, ngati maselo atsopano akugwira ntchito bwino, komanso ngati pali zotsatirapo zina.
• Kuopsa kwa matenda: Mankhwalawa angafooketse chitetezo chamthupi chanu kwakanthawi, zomwe zimawonjezera chiopsezo chanu chotenga matenda. Ngati mukumva zizindikiro monga malungo, kuzizira, chifuwa, kapena kupweteka pakhosi , musadzipatse mankhwala. Imbani gulu lanu lazaumoyo nthawi yomweyo . Komanso, yesetsani kupewa anthu odwala momwe mungathere.
• Kupereka magazi: Simungapereke magazi mutalandira chithandizochi.
• Kuopsa kwa khansa: Ndi njira zamakono zochiritsira majini ngati izi, pali chiopsezo chochepa kwambiri chotenga mitundu ina ya khansa ya m'magazi. Musachite mantha ndi izi, koma lankhulani momveka bwino za chiopsezochi ndi momwe chidzayang'aniridwire ndi dokotala wanu.
• Malangizo apadera kwa amuna: Ngati ndinu mwamuna amene akulandira chithandizochi, muyenera kugwiritsa ntchito kondomu mukagonana ndi mkazi amene ali ndi mwayi wobereka. Njira yodzitetezera iyi iyenera kutsatiridwa kwa miyezi 6 mutalandira chithandizo. Ngati mukukayikira kuti mnzanuyo ali ndi pakati panthawiyi, dziwitsani dokotala wanu nthawi yomweyo.

Kodi zotsatirapo zake zingakhale zotani?

Monga mankhwala ena aliwonse, chithandizochi chingayambitse zotsatirapo zina. Zina mwa izo zimafuna chithandizo chamankhwala mwachangu, pomwe zina zingakhale zabwinobwino.

Mndandandawu sukuphatikizapo zotsatirapo zonse zomwe zingachitike. Kuphatikiza apo, ngati mukukumana ndi zizindikiro zachilendo, lankhulani ndi dokotala wanu za izo.