Patient Stories: Said

Dysferlin is my prison

I have a dream with a great hope
like a shining Moon
dispelled the darkness of the night
and prepared the way for a new day with a sun in our heart
oh! it is a very dark long black night
give no chance to the light
Layers secret darkness is in the cells
so we need many moons to realize our dream
we can achieve it with a team of supernatural intelligent sharp human mind, who reached
one day the moon with his skills
I have a dream
to born again
before I miss the Train
to live a second without Dysferlin
To be free I and my fellow sufferers
from this long black nightmare
Is it our Destiny?
No, no at all ! I don't believe in destiny and swoon
I believe in intelligent human mind make the miracle soon
I'm sure that time will come to open the door
and we will defeat together this enemy
But I can't wait any time more
I want it now at once and in this moment
not after the autumn comes
my paper gets dropped
and I will be go not alone
So please Intelligent Human Mind put Dysferlin in a prison give it no chance to destroy our body and captures our dreams!

Every prison has a name and Dysferlin is the name of my prison. But first of all I thank from the bottom of my heart all the good and hearty people who try to help us “me and all my fellow sufferers” to be free from this prison.

A lot of thanks to Jain Foundation for its wonderful work of course with all the doctors, professors, and scientists from all over the world (”Intelligent Human Mind”) and all other noble people who support it to achieve its goals.

But can I describe this Malignant disease
as a prison?
Yes and I do not exaggerate in this description.
I express my feeelings and describe the situation as it is!
Sometimes I feel my self like a lion in his cage, my roar is smothered in my breast.
I can't walk and run free as I will. So I stay alone anxious with my mental pain.
Sometimes like a Bird witout wings, I can't fly in the sky, but I drag myself with great effort on the ground.
Sometimes like a fish in the horror of fishnet without any single chance to escape and to come back again to the Sea, or to escape from dysferlin and to come back again to the normal life.

I was born 1951 in northern Lebanon on the Mediterranean coast near Tripoli. Our summer is very nice and the sea with all kinds of sports was my lovely place to spend the summer holiday. Until 1975 I had a normal and very active life. I was 24 years old. A healthy young man; strong, sportive and joined in all activities of life. After this time I entered gradually and very slowly into my prison. For example I can't run as before, I can't play football as before, and I am not so strong. I went to many doctors in Tripoli. They found nothing wrong with me.

In 1980 I left Lebanon and went to Germany. The doctors there told me they suspected I had muscular dystrophy, an incurable disease. In 1984 I gave my first muscle biopsy to identify my disease. But the doctors found nothing and the suspicion remained muscular dystrophy. In 1994 I gave a second muscle biopsy, but again the Doctors found nothing. In 2002 Prof. Dr. med. Simone Spuler from Experimental and Clinical Research Center (ECRC) in Berlin convinced me to give a third muscle biopsy. That is when I learned that dysferlin is the name of my prison.

I'm still trying to fight with all my skills and means against this disease.
But I fight on lost ground.
Nevertheless, I will not give up as long as I breathe.

 

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