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واریزمبلغ سیصدهزارتومان کمک هزینه درمانی در قالب اعیاد برای هریک از ۴۸۶ بیمار پروانه ای
آبان ۲۱, ۱۳۹۶
بیولوژیست‌های ایتالیایی چطور جان حسن کودک ۷ ساله پروانه‌ای را نجات دادند؟
آبان ۲۱, ۱۳۹۶

درمان کودک ۷ ساله مبتلا به بیماری پروانه‌ای (EB)

در یک درمان حیات‌بخش، حسن ۷ ساله کودک سوری مقیم آلمان که مبتلا به بیماری پروانه‌ای (EB) بود، حالا یک پوست اصلاح شده از نظر ژنتیکی را دریافت کرده که ۸۰ درصد بدن او را پوشانده است.

در این فرایند درمانی، بخشی از پوست حسن برداشته شد، DNA آن در آزمایشگاه ترمیم شد و سپس پوست ترمیم شده به بدن کودک پیوند زده شد.

بعد از حدود دو سال پوست جدید بطور کامل نمایان شده است.

خانواده این کودک جزئیات بیشتری را به خاطر حفظ حریم شخصی منتشر نکرده‌اند اما پدر حسن این اتفاق را شبیه یک رویا توصیف کرد. وی گفت: حسن هم‌اکنون کاملا حس یک انسانی عادی را دارد، بازی می‌کند، فعال است و از زندگی لذت می‌برد و اصلا دیگر آن آدم قبل نیست.

هم‌اکنون هیچ درمانی برای EB وجود ندارد و از هر ۱۰ بیمار مبتلا به این بیماری حدود ۴ نفر به سن بلوغ هم نمی‌رسند.

حسن در ژوئن ۲۰۱۵ با وضعیت بسیار وخیم پوستی به بیمارستان کودکان در بوخوم آورده شد و همه خود را برای مرگ او آماده کرده بودند.

به گزارش بی‌بی‌سی، اما تیمی از بیولوژیست‌های متخصص در ژن درمانی از دانشگاه “مودنا و رجیو امیلیا” ایتالیا به بیمارستان آمدند و با تائید خانواده شروع به انجام یک درمان آزمایشی از طریق سلول‌های بنیادی و پیوند پوست کردند که در نهایت با نتیجه خیره‌کننده‌ای مواجه شد.

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