مرضى الثلاسيميا: حياتهم تتوقف على المتبرعين والأدوية تفرغ اجسادهم من الحديد
المنصة – نوزت شمدين
بوجه شاحبٍ وعينين أتعبهما المرض يراقِبُ قطرات الدم وهي تتابع هابطةٍ من قنينة معلقة فوق رأسه عبر أنبوب مربوط إلى ذراعه لسد النقص الحاصل في جسده العاجز عن صنع الهيموغلوبين. هكذا يقضي رغيد المصاب بمرض الثلاسيميا ساعات انتظاره الطويلة يوماً واحداً في الأقل كل شهر.
أجراء روتيني درج جسده النحيل على اتباعه مذ كان في شهره السادس وسيتعين عليه الإستمرار في ذلك مدى الحياة إلى جانب تناول دواء خاص بنحو يومي لتخليص أعضائه الداخلية من ترسبات الحديد نتيجة لتكرار أخذ الدم، والتوقف عن أيٍ من ذلك يعني موتاً محتماً.
ومع انه أكمل قبل أسابيع عامه السابع عشر لكن المرض عطل نموه الجسدي فيبدو لمن يراه أنه في العاشرة كأقصى حد. لا يقوى رغيد على القيام بأي من الفعاليات والأنشطة الرياضية التي يمارسها الأصحاء من أقرانه، لأن عظامه البسكويتية قابلة للكسر بسهولة تامة بسبب هشاشة العظام حتى أن طفولته كانت مسجونة خلف قضبان الموانع التي يفرضها المرض.
كل هذا ولمعة الأمل مازالت مشعة في عيني رغيد وهو على يقين تام من نه سيهزم المرض. ويقول بنبرة صوته العصفورية أن: “المرض حل في جسدي دون إرادة مني، لكن انتصاري عليه سيكون حتماً بإرادتي”.
ويتابع بنظرة ملؤها التفاؤل: “قبل سنوات كان يجب أن آخذ دواءً أسمه الديسفيرال بحقنه بواسطة مضخة وإبرتها كانت تمكث في بطني بين 10 -12 ساعة كل يوم، اليوم تغير الحال وأتناول بدلاً عن ذلك كما يفعل الكثيرون غيري حبة اوكسجيد واحدة يومياً”.
يتزود مرضى الثلاسيميا بالدم مرة واحدة شهرياً ويتناولون دواء سحب الحديد من أجسادهم كل يوم وينتظرون بصبر تحقق حلم عثورهم على متبرعين بنخاع العظم وإجراء عملية زراعته في أجسادهم بمستشفيات ايطالية أو هندية بكلفة تصل الى مائة ألف دولار.
والثلاسيميا أو (مرض فقر دم البحر الأبيض المتوسط) هو أحد أمراض الدم الوراثية التي ينقلها والدان حاملين لصفة المرض ولا يعانيان منه إلى مولودهما الذي ستظهر عليه علاماته وآثاره الموجعة.
ويصل عدد المرضى المسجلين في نينوى بحسب مركز الثلاسيما الى (1500) مريض ونحو(5%)من سكان المحافظة الذين يقترب عددهم من أربعة ملايين نسمة يحملون صفة المرض، أي نحو مئتي ألف شخص.
طبياً فإن اقتران شخصين حاملين للمرض ينجم عنه وباحتمالية تصل نسبتها إلى 25% ولادة طفل مصاب بالثلاسيميا. وزواج شخص حامل للمرض والطرف الآخر طبيعي ينجم عنه ولادة طفل حامل لصفة المرض وليس مصابا به أي لا تستوجب حالته علاجاً. والثلاسيميا ينتشر في العادة بين الفئات القبلية بسبب زواج الأقارب و الجهل و تتعدد الحالات في العائلة نفسها رغم أربابها باحتمالية ولادة طفل آخر مصاب.
يقول الدكتور مدين من مركز الثلاسيميا في الموصل إن “اجراء فحص ما قبل الزواج هو الحل الوقائي الوحيد”
أنشأ مركز الثلاسيميا في مستشفى ابن الأثير بمدينة الموصل سنة ١٩٩٧ ويقدم العلاجات بنحو مجاني لكن محدودية الخدمات التي يقدمها المركز بسبب قلة التمويل يؤول الى اعتماد المرضى وذويهم وغالبيتهم فقراء معدمين على ما توفره جمعية الثلاسيميا أو ما يجود به المحسنون من دمائهم المتبرع بها أو أموالهم التي ينفقونها لشراء الادوية.
وليحصل المريض على حصة شهرية من الدم عليه أن يجد متبرعاً لأن مصرف الدم لا يملك دائماً الخزين الكافي. وعن ذلك يقول مدير مصرف الدم الرئيسي في الموصل دكتور محمد دواج خالد بأن: “جمع قناني الدم يتم عن طريق حملات التبرع وهي غير مدعومة حكومياً والمتبرعون المتميزون يحصلون على هدايا رمزية بسيطة قد لا تتعدى علبة عصير واحدة”.
وأشار الى مشاكل تواجه مرضى الثلاسيما خلال تلقيهم الدم، منها احتمال الإصابة بفايروسات التهاب الكبد نمط بي وسي لأن التقنيات الموجودة في مصرف الدم بسيطة الفعالية لذا يتوجب تزويد المستشفيات بأجهزة حديثة لفحص الدم قبل نقله الى المريض.
الأمل الوحيد لشفاء مريض الثلاسيميا يكون بالحصول على متبرع بالنخاع مطابق 100% نسيجيا مع نخاع العظم في جسده. وهو أمر نادر جداً وقد يقتصر فقط على الأشقاء التوائم أو بضربة حظ تشبه العثور على أبره في كومة قش خارج نطاق العائلة.
الحصول على متبرع لا ينهي المشكلة فلا بد ان تُجرى عملية زرع النخاع معقدة التفاصيل في الهند او ايطالياً لأن العراق لا يمتلك البنية التحتية ولا المقدرة الطبية لإجراء مثل هكذا عمليات تصل كلفتها زهاء 100 ألف دولار.
جمعية الثلاسيميا في نينوى والتي قوامها أولياء أمور المرضى أرسلت بين عامي 2005- 20019 (47) مريضاً مع المتبرعين بالنخاع إلى ايطاليا بموجب اتفاقات أجرتها مع مستشفياتها، عاد منهم(45) أصحاء وتوفي إثنان فقط.
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