Whimpers and Whines of Yemeni Patient with VERY Complex & Rare Disease ,

The story of Mohammad

Kind Attn : Rare Disease Day

Dear World Rare Disease Day People ,

My name is Mohamad, 48 years old ,from Yemen. I have a rare and complex diseaease / Brain Basilar and Vertebrobasilar Mega-dolicho-ectacia .
I went to Egypt but the doctors said they regetted their inability to treat this disease.They believed, according to their reports attached with this message , that this case can only be treated in countries like France , or Japan .Actually they suggested a French doctor named ( Pro. Jacques Moreit )
I contacted Dr Moreit who replied positively .However , the cost for treatment he offered was very costly.
Within my poor society , it is difficult to get the people who can afford or accept solving this matter , as to get me soon go abroad for medication.The cost for the twice trip to Egypt for treatment was the
best I could do through the help of friends and relatives back in Yemen.
Thus , it is beyond any possible venues to get them recollect money to help me again,especially with costs for treatment in France or Japan.
With that being said, it is almost impossible for me to afford the cost of treatment. Still I find myself pushed to ask for foreign help, in an attempt to do the best we could by knocking all doors possible to do something at the soonest. If that is not possible to you to offer any assist, I still appreciate .
Then after doing the best we could, I would have to accept it, and face whatever development of the case to come.
I am in Yemen where wars tend to never stop ,where I am left alone as a poor citizen in a country with no actual government authorities , to suffer from this disease along with daily drugs I rarely can get hold of, weekly INRR PTT PT blood tests and on and off MRA MRI Angiogragies.
Being a popular published poet and writer does not make any fruiful sense in this area of the world,especially after the ongoing crisis started in 2011 , we lost conact with papers, magazines and publishing houses and the other different sectors dealt locally or internationally because of which .
Finally , let me express my sincere thanks for taking the time to review my case reports and letter. Being of this high level caliber and must be very busy schedule, it is very kind of you to do.

Please let me know.
Please Note :
I can send you all patient films links ; case reports and CDs on google drive, along with an official letter from officially specialized local Centre , once you confirm requesting so.

Best regards,
Mohammad

القصة المرضية
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اسم صاحب الحالة المرضية : محمد
مصاب بمرض نادر في شريان الدماغ القاعدي ، ( انتفاخ و تمدد و تعرج و ارتخاء )
اسم المرض بالإنجليزية : Megadolichoectasia
المضاغفات :
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دخل في غيبوبة أسعف على إثرها لمشفى في تعز عام 2013 ، و بعد عمل الكشافات المغناطيسية و المقطعية تبين أن شريان دماغه
القاعدي متوسع و توسعه يبلغ 8-9 ملم بينما الطبيعي 3 ملم و رأى المشفى أن
ينقل المريض مباشرة للخارج لعلاج حالته النادرة التي يخشى أن ينفجر فيها
الشريان نتيجة لتمدده الكبير . و تم وصول المذكور إلى مصر فأكدوا له أن
هذه الحالة نادرة جدا و لا يعالجها غير طبيب فرنسي واحد في الدنيا اسمه
جاكز موريه.
Prof. Jacques Moreit replies:
I did review extensively the file and the pictures
of your relative Mr Mohamed Noman Aly who is 40 year old. It is
reasonable to link the clinical signs to the anatomical findings on
the basilar artery. What the patient presents is a dolichomega basilar
artery which is related to his high blood pressure, associated with
progressive modification of the architecture of the arterial wall of
the vessel. This kind of disease has a tendency to evolve towards
dissection of the vessel wall with constitution of a partially
thrombosed dissecting aneurysm, which has some risks of rupture, but
the major risk, with time, is a growing mass effect on the surrounding
structures, because the aneurysm behaves like a tumor. When we reach
that point, the treatment is really difficult, because we have no real
understanding and no real treatment to control this “tumor like”
evolution. Because he is young, the only reasonable treatment we can
do, is to strengthen the wall of the vessel by deposition of “breaded
scaffolding stents”. Those stents are different than “flow diverter
stents” whose mesh is too tight and carries the risk of major stroke.
Of course in addition to this endovascular treatment, it is absolutely
necessary to have a very good medical treatment to control the high
blood pressure. If you want me to take care of this patient please
tell me .

– أصيب بجلطة في الدماغ عام 2014
– الشلل الوجهي نتيجة اختلال العصب الخامس و السابع و الثامن
– ثلاث فقرات عنقية متآكلة
– انزلاق الفقرتان القطنيتان أسفل الظهر
– ارتفاع نسبة الكوليسترول
– اعتلال المثانة بسبب الدم المتسيح الناتج عن تناول الوارفارين الضروري يوميا و الذي يحتاج لفحص INR كل ثلاثة أيام مدى الحياة !
تعرض لنكسات دماغية خمس مرات، و تهدده عدة جلطات تتربص به حاليا في شريانه المتعرج حسب تقارير مصر ، و نتج عن توسع الشريان التهاب العصب السابع و الثامن و الخامس ( انظر أشعة الأنجوجرافي ) وظهر مؤخرا توسع في الشريانين الفقريين ايضا الى جانب توسع القاعدي بما يقارب 9 ملم.
رابط الانجو على جوجل درايف
https://drive.google.com/drive/folders/0BwCn0gS5uEpNNkdFN0ZOU0xIMHc
الدوء اليومي مدى الحياة :
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1- conqor5
2- Betaserc8
3- warfarin5
4-atorvistatin20
6- Amilo 5
7-“aspirin 75
8- Tegratol 200