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Eli Fatehi

Iran

•I am not a woman with a bleeding problem, but I met a boy five years ago who suffering from severe type of hemophilia.
My nam is Eli, I am from Iran .I am architecte and that boy was cinema director.
That boy also has a different job ! He was a good manager of hemophilia society of Iran in our city.
We met each other five years ago in language institute, I heard about his job and I was wondering what are they doing there. After a few months finally I found myself in his office (hemophilia society). It was great because they helped to the hemophilian people to get their medicine! Finding a good job for them and also teaching them and their family to make them understand about their body,the sign of bleeding,and everything that they needed to know as a physically or mentally.After while I started to helping them too,but just like extra helper not like them actually.I liked him because he was wonderful person,he cares about the patients and it was beautiful for me. One day I get that I in love with him and I get that he does love me too. After a year our love was much more than before.
We loved each other but something was wrong between us! He had kind of obstacle for me! I didn’t get that and I was unhappy and thought he is not like before or he won’t continue more than this! Util one day when we were alone he told me sit down , I have to tell you something that I never said to even my bests friend, It’s my secret, I don’t want to people see me as a different boy.I was stressful and he told me ” I am a hemophilia person too , Type A”!!! And continued ,I understand it should be hard for you, I love you but this is my big problem,he stopped talking and just looked at me.
Wow! I was wondering, he became to my hero, he was too strong, who tell that hemophilian children can not help to the other people or have no good job,have not good education or can’t be a bodybuilder!! I was silent and thinking about this! And asked him whay you didn’t tell me before?! He said I really love you and I afraid of telling this to you because I understand it should be hard for you, I can understand your feelings now and also told me this is my weakness, I won’t tell this to the other people cause their look will changed! He was sad and he thought I wanted left him, and he told me if you want to left me it’s correct time. I said no, you can’t understand my feelings, whay am I should left my love?!! I just hugged him as hard as I could . I told him it doesn’t matter for me, I love the way you burn,I love you even more than before. I want to be with you forever. And I get that whay he had a obstacle for me!! when I Came back to my home I thought how much he can loved me and trusted me to share his secrets to me! And I was really feeling happiness. We fall in love together and after a while we decided to get married together. When We went to honeymoon , when we were ready for sleeping at first night he said I would like to tell you a story and I was too happy like a child and he started: when I was a child Iran decided to production hemophilia factors from human blood , but they weren’t carful to choose a right and clean ones . It wasn’t enough foreigner medicine at that time too, so we had to use of them. But after few months we thought that medicines was viruses, and because of that some of the children attacked to HIV,some of them Hepatitis C ! And I attacked to hepatit C ! . My heart just stopped biting . And he continued sorry I was afraid to tell you about this because I am afraid of losing you! Don’t worry,I really take care of you and I will be very careful like before. At that moment I didn’t know about the HCV but i was really sorry for all of them and felt shame for our government and also those doctors! I started to breathing and crying,asked him “are you ok now?what shuld we do? I don’t wanna you die?!” And he laughed at me and said we should be hopeful for coming the new medicine. And I was just loving him like before and nothing changed for me. Every thing goes well until I understand my husband didn’t have special health insurance that the hemophilian used it,and when I asked why he told me,because I said to reporters for many times in medical magazine the government should give us enough medicine (factor)! But after last report of mine they just cut my insurance,and I have to use from my brother and some of my friends medicine! That’s broken my heart!
And finally he found it they don’t care about them so they decided to organize their medicine, cause the medicine wasn’t really enough for all of them.And I found it beautiful,
They helped each other to be alive. Until one day we heard one of this child died because of lake of medicine in hospital!!! We were really sorry,and the other day we heard again about one of them,and one of them! That time my husband was really angry and he started to have a new interview with the government newspapers! And he just said that the insurance government doesn’t give us our medicine, they are thieve from our medicine budget! It’s enough! After a few days my husband was disappeared for three days!
One day after that his interview,they arrested him in his office without any explanation and after few days they finally left him. Yes,they tortured him and of course they oust him from his job.
Now we are here in (Turkey) ,so we had to find a way for getting medicine for my husband how was at that days ill and even he walked hardly. Because of lack of factors,he had inside bleeding (cause of hitting him )We didn’t know their language and no one knows English! We went to all of hospital in our city here and they couldn’t help us! After four months they decided to talk about our problems and one of them told us “you should wait,we have to decide,we will call you if it was ok!” For me it was like go and watch your husband diying!!
After a month they call us and said ok,you can come and take your medicine! Wow ,I was really happy and started to cry because of my husband life. Yes,they finally gave us that medicine but it wasn’t easy for us,we didn’t know no one,no language, no home,no nothing. I just try saying my story in short way here!
After all we had to finding job for our lives. Finally by the men who wants to help us ,we don’t know why! But we started to working at a cafe. It was hard for us,we worked as a waitress and me as a cleaner in the kitchen.
It was hard but we decided to do anything for our life. But after few months my husband felt so pain in his liver, that job was redline for hemophilia person but he didn’t care about himself. We afraid if that pain is cause of Cirrhosis of the his liver . One year before he had a test and his results was near two million and now his enzyme was about ten million from two million! Because of the smoke was in the cafe, our meal and also our time sleeping! All of them was awfull. We worked 4 pm util 4 am. They gave us one time food but it wasn’t healthy ! They gave to the personel all of the material was in the kitchen but they were rotten food !! We didn’t die but were sick all the time,and we couldn’t sleep enough for the other day! One day we understood by our dear friend Kathleen in USA , there is a medicine for hepatit C ,and she gave us some information about that medicine “HARVONI “. I was really happy when heard about and when we asked here , they told us we waiting for that medicine too! So we had to wait too again.His pain became day by day worse, we could just praying. One day after 3 months we found out it’s came.
So our job was just started. We asked from doctors how can we get this medicine ?And no one could help us again!But we didn’t stop and we went anywhere that we could and knew! Turkey insurance government told us ,that you can not get this medicine because you are not a citizen here,yes we are as refugees here cause we didn’t have any choice! No one cares about our life here too! But every time we heard a unpleasant news from them but we didn’t stop,we just counted !After hard and intolerable sixth months finally we get that hard medicine,and now my dear and lovely husband using of them. One month later it will be finished and after three months we have to take a new test,if it was clean and negative results so that means it worked.we did it together.I am still learning from this women and men who has a bleeding problem,they are all strong in all around the world. One of them who helped me to save my positives energy and never give up, and specially teaching me every day and proved me that it doesn’t matter where are you from,which color skin,what religion do you have,just one thing it’s matter “you are a human” , and it doesn’t matter how could be hard to help someone from the other world to another world ,we can always do! I love you all.
With respect Eli

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