In my grandfather’s council, I listened to wisdom and read to him the stories he was telling him!
My family discovered my patients at the age of five and the doctors said that I will not live long
I went to Egypt alone at the age of ten for treatment and there my life has completely changed
The head of the Bahrain Association for the Care of Skiller Patients, which serves 7,000 patients in Bahrain, and the head of the World Organization for the Amigon Selvers, which represent 27 million in the world, Zakaria Al -Kazim, said that after he discovered his illness and suffered from him, God Almighty survived sadness in his childhood, and soon he discovered that the disease is a grant from his Lord, and his life was stations of gifts and fortunes, and he entered a station after another And excellence, and he is still loyal to his promise to his family that he will live a long life full of success and happiness, after the doctor at the time told them that he would die after a year or a little more.
Al -Kazim added that the disease deprived him of the pleasure of playing with children, but he gave him the love of reading from his early childhood, and the hobby increased when his grandfather was asking him to read stories to him until he recounts it to the pioneers of his council, then he went for treatment in Egypt at the age of ten years alone for three months, and there he read philosophy, and he relied on himself in managing his health file, and went to the cinema, theater and the famous wall of Azbakeya to sell books. He pointed out that he was his grandfather on Hajj and Umrah trips and his father in his trade, and he had inspiring events with difficulty and fortunes, then he tried to study medicine, but he failed despite the fact that his father sought to live the dream with him, and when he was confirmed that education is indispensable, he obtained a loan, and he obtained a bachelor’s and master’s degree in “Business” from Britain, and he returned and married his student in an apartment for rent; Because he wants to rely on himself.
Al -Kazim said that he began his voluntary journey in the service of patients in 2006, and completely devoted her to six years later, accompanied by his friends who traveled with them to study medicine and succeeded and did not succeed, and three of them wrote a success story in the association and the heir hematology center.
Al -Kazim opened his heart and mind to “Al -Watan” to recount many of them at the personal, societal and national levels .. to the text of the dialogue:
Returning to the balcony of the beginnings. Do you remember time, place and man?
– I was born in a clip in the late 1973, which is an agricultural village, in a simple house, to the father of an orphan of the mother, fond of electricity and entered the world of trade from this section.
Everyone was interconnected, and as a “father” awakened the good in the children and participated in their upbringing on morals and “masks”, so we were ashamed to return from school to tell the parents that the teacher punished us for any reason, because in this case we will punish again!
What are the hobbies available to a child sick with a sclerosis at the time?
– There was no television or ability to play with the young, so I inherited the love of reading from my father, and my grandfather had a council in which people gathered in their joys and sorrows and solve their problems, and my grandfather was not a reader, but he liked to tell stories with a lesson, and I was sitting in the corner of tea, coffee or water at the hands of the guests, and listened to serious stories and social and political conversations.
In his council, I listened to wisdom and contributed to telling stories on his tongue, and he was asking me what I read today? I tell him the stories from the book and tell it in a simple language, which makes me great compliment.
Do you remember the discovery of the family for your illness?
– My family discovered my injury to the Skir at the age of five, after they went to the American Mission Hospital, and there they told them: Your son has sickle cell anemia, which came to stay, so this was very sad, and their shock increased, that they said that I will live for the sixth or eighteenth, or at most to the forty -second. And now I am at the age of fifty -two and I promised my family to live for a long time and not leave them except after achieving success and happiness, God willing.
How did things change after discovering the disease?
– The parents dealt with me in a special way, so I was spoiled and not punished, but there were many delegates, and the disease prompted me to love reading more, and going with my grandfather on Hajj and Umrah trips and before that the homes of pilgrims and pilgrims in bliss, Manama and various regions, in order to take passports and money and sign contracts.
I soon entered one of the ministers, and I needed to gain confidence, so I told him that your aunt so -and -so cook a wonderful porridge!, And when he was surprised, I told him that I entered your father’s house, uncle and aunt. Thus, my grandfather inherited his social balance, and made me a successful social.
What is the story of your going to Egypt alone for treatment?
– I went to Egypt with my father and my mother while I was six, then my father sent me alone at the age of ten, and I was shocked, but I look at his decision now with great love and admiration. He sent me to the Hassan Hilmi Mandour family in the “Hundred Aqaba” area in the capital, and he was working with my father to sell devices, electrical tools and furniture. I lived with the Baba Dhimi family and when they were taking me to the doctor, I was explaining my condition, and I turned my health file since this time. There, I got out of a simple village to “the mother of the world”, and I got to know Abbas Al -Akkad and philosophy.
The reason for the travel was that a sample was pulled from my back, which caused me to go in my Yemeni feet, and I was walking in the village, and I could not raise it and raised the dirt, so the schoolmates were bullying me, but those who were sitting in front of their homes, they think that I play like children, so they were knocking me saying: “Raise your foot, make you a man.” A solution, so he decided to go to Cairo.
Was your going with difficulties or a grant?
– I turned my health file, became the owner of a decision, and I went to the famous wall of Azbakeya to read books, and the owners of the libraries gave me a seat to sit and read, and if I liked a book I bought, and after the afternoon prayer, I go to the cafe, on which the adults only sits, and when they knew that I am a child coming from Bahrain, they were immersed in their love, so they played the domain instead of the table until I play with them. The “orchid”, and hadiths of them in life, family and politics.
On Friday night, it was next to the house a tent for occasions, and I heard from it music and monologues, as we used to go to cinema and theater, and the Baba Helmy family was trusting me a lot, and let me go to libraries, café and cinema.
What changed in you after your return from Egypt?
– I became good, but I was speaking in the Egyptian dialect, so my colleagues called me “O son of the Egyptian!” The teacher does not punish them.
Nuba Siller did not pour me until 1991, and my father was asking me to go with the workers at 6.30 am, to inventory the store and follow the work, and in the summer of that year I went with my grandfather in the Hajj campaign, and God died while we were in Mecca, and I remember that some were going to Umrah and marry there, and on the night of his death I was holding the crumb and the bride of the groom and the audience, so I said jokingly: He said to me: Tomorrow. And I brought him to the room, then God passed away.
My father decided to return to Bahrain to accept the condolences, and I kept me for 360 pilgrims and employees and I was 17 years old, so I felt that I grew up, after I assumed the responsibilities of my father and my grandfather, may God have mercy on him.
My father inherited the care of the pilgrims, and the incident of Al -Mu’tasim tunnel fell, as many pilgrims died because of the stampede, and he was 11 deceased in our campaign, and the authorities buried them after taking pictures of them, so my father sent the pictures to me in Bahrain and became responsible for meeting the families who came with the hope of their son alive or missing, and when they saw the picture they collapsed and they cry, so I was forced to.
Does working on your educational achievement and completing the study?
– I was in the secondary stage, and my father devoted himself to traveling to the holy places, and obligated me to manage the work on the summer vacation, and I was running the trade, and I met travelers and received money and passports, and I go to the bank and the travel office, on foot from the central market to the Bab Bahrain.
When I graduated from high school, my father wanted to live my dream, so he asked me: Which college you want? I told him medicine in India, and about a hundred thousand dollars for me, and there I met Dr. Jaafar Al Touq and Dr. The honor of Al -Mashaal, who now runs the hereditary hematology center, and problems occurred in Bangalore, so we returned, and after a while the two friends returned and completed medicine, and I went to Czechoslovakia, Malta and Morocco, and I did not complete the study.
My father gave me a lesson, so he expelled me from his office and he gave me a monthly expense 250 dinars and with a car and a phone, so he prevented me from the expense and this made me search for work, and I actually worked with a salary of 180 dinars after I spent 250 and worked as a manager and became the “boy” who is called to go and exalt and do and do not do! She learned the lesson and knew the value of education, got a loan, went to Britain and obtained a Bachelor’s degree in “Business” 1997, and a master’s degree in the same specialty 2001.
When did your volunteer journey start serving your colleagues?
– I was working in the morning at the institute, and evening with the father, until I decided to cut to serve the patients of the Skiller in 2006, and a year before I was studying the students at the institute, I asked about a student, and they said did not come, so I said: “Taklt us”!
The patient with sickle cell anemia “scclor” suffers from a pain that scientists are ten times the pain of childbirth.
Is it easy for a diameter patient to marry? What is the story and fruit of your marriage?
– I got married after the bachelor’s degree, and I was working as a lecturer at the Bahrain Training Institute, and I had a diligent, beautiful and sophisticated student, so I went to her family and said that I was Zakaria and a sick person, and they agreed and married in an apartment for rent, and God blessed us in Ibrahim in 2001 and he is now an engineer, then Elias in 2006, and studies the engineering of cybersecurity.
To establish the Bahraini Association for the Care of Skan Patients is a story. We would like to know it?
– The association was founded in 2006, and I retired in 2012 to devote himself to serving the patients of Skiller, after I felt conflicting interests, because the pilgrims in the parents’ campaigns were from the velvet class, so I wanted to speak in the name of the patients without any effects or obstacles. In 2008, we wanted to choose an honorary president for the association, and decided to choose the legislation on the face and money, and went to Al -Wajih Khalifa Al -Dhahrani without knowledge and did not hesitate. He was the owner of the draft law on the hematology center, the increase in the number of days of pathological holidays for diabetes patients, and the patient’s calculation of two citizens in the Bahnah jobs.
How did you contribute to reducing the percentage of births with the disease?
– In 2006, legislation was issued by mandatory examination before marriage, and I used to go to mosques and councils with Dr. Jaafar and Dr. Honoring to raise awareness and request a fatwa for the patient’s marriage to a healthy person, and the “Bahraini grandmother” helped us where the grandmothers and mothers were asking the examination and refusing the marriage if the examination was negative so that a patient with a patient was not born, and with the progress of societal awareness, the number of sick births 2010 became four per thousand after 4 per hundred in 2006, then it became 2024 six births per ten thousand.
Behind the establishment of the hereditary blood diseases center many details, what are the most important?
– The center was opened in 2014, and three years before the “Time of Events”, the late Prince Khalifa bin Salman asked me, and we were in Ramadan, and he asked me about my illness and affected, and then I went to the Council of His Highness a week, to talk about the Sakler, and His Highness in 2012 sponsored the first regional conference on the disease with the participation of 32 countries, and ordered the reception of medical teams from the Royal College of Surgeons in London and the American John Hopkins Hospital to set a plan Their proposals within the government’s action plan 2014-2018.
The center serves 160 patients per day out of 7,000 patients in Bahrain, and they represent a third of the number of visits to emergency, which is estimated at 800 – 100 visits per day.
Your volunteer experience is that you mean the beneficiary in his place ..?
– Yes. Bring 1- 4 hours a day and 4-5 times a week for the hereditary blood diseases center, so that I can be with the patient in the place where he needs me, and close to his pain and needs. My job is not to provide health care, but I am in the right place.
Are there medicines for a sclerosis?
– There are 27 million in the world in the world, and 75% of children born in the disease in Africa die under the age of five, and no medicines and treatments have been provided to them because their purchasing power is weak, and for years, His Highness the Crown Prince asked me about the medicines and I answered him: There is a hydroxoria but it was not made for the Scller, so His Highness said: Our Gulf portfolio is great and companies must make medicines. Indeed, after a few years, the Gulf pharmaceutical companies flooded the Gulf wallet, and 8 drugs were made, and Bahrain contributed to the development of 4 of them.
What is your assessment of the adoption of Krisper technology in Bahrain?
– The Americans are still discussing the cost after the government endured 15%, and in Britain they authorized the medicine, but they are still different from paying, the government, insurance companies or the patient? As for Bahrain, the government paid $ 2 million to the patient and did not hesitate. I am confident that Skaller patients enjoy two teams: the Salmaniya team and the government team.
You have an inspiring global experience .. Tell us about it?
– I brought about 80 conferences a year, and when they know that I am from Bahrain, they listened to listen to a national experience, and I believe that His Highness the Crown Prince, with his wisdom and visions, had seized the leadership sites, and I attended with Dr. Jaafar is the two most important conferences in the world, ASH in the United States, and ASPCT in Britain. When the enlargement organization wanted the sound of the sickle cell to choose a president, Africa could have chosen one of the continent but they did not want Western and disagree about choosing one of them, and here I learned to make friends as Bahraini, and succeeded in the mission.
One last word ..
– 90% of the patients with a doctor or the center does not review, and only 10% are those who suffer from seizures, and we found that this large percentage lives well socially, emotionally and living, and we try to put our fingerprint in the Bahrain team to change the lives of those who suffer from the disease seizures in order to recover, and we hope to defeat the sclerosis one day.
