respond to advice
Dr. Zakaria Muhammad Hawsawi, Director of the Center for Hematology and a Consultant of Genetic Hematology and Oncology at the Children''s Hospital in Madinah explained that 90% of those we meet are carriers of the disease before marriage do not respond to advice, and continue marriage for social considerations, or pressure from parents not to break the engagement, and the result is Children with blood diseases, sickle cell anemia or thalassemia. He pointed out that these diseases cause major health problems for those with them, and they are chronic diseases that suffer for life, indicating that we met at the center approximately 50 incompatible cases, and the response to non-marriage was only 4 cases, as they responded to advice and instructions, and broke the engagement, explaining that they are reviewed in the center by 120 children. To receive the treatment, he said that the annual treatment of a thalassemia patient costs 100,000 riyals, and he added that we sought to establish the Madinah Society for Charitable Genetic Blood Diseases to support and help patients. Al-Madina held a lengthy dialogue with Dr. Zakaria Hawsawi, who talked about many things about hereditary blood diseases. So, to the text of the dialogue:
# In the beginning we would like to give us an overview of the center?
The center was established in 1412 AH, and its start was in the old building of the Obstetrics and Gynecology Hospital next to the Haram al-Nabawi in a small section, where it provides service to these patients with sickle cell disease and thalassemia, then the department gradually developed until it turned into a center in the new building, and said we accommodate 10 patients daily The capacity of the center is 25 beds, and there is a part for hematomas, and now a new building is being constructed around the hospital, in which we will have a large section, and within two years it will be completed, and it will be a specialized and integrated center with a large capacity for hematology, in addition to other specialties through which we can provide services More for patients with hereditary blood diseases, and Dr. Hawsawi added that the center in the city is considered one of the best centers in the Kingdom, as it provides comprehensive services, as we provide the patient with all his needs, by requesting doctors from all specialties that the patient needs from outpatient clinics to examine him, such as an endocrinologist The deaf and diabetic, the gastroenterologist, and there is a nutritionist to educate them about the appropriate food for them, and with us the social worker makes a great effort to follow the patient in schools, so that it is facilitated All matters are to him, and therefore they are taken into account, and we have provided a special laboratory in the center, the analyzes he needs, and all services are provided to the patient in the center, and the clinics are never required to review, indicating that we are currently coordinating with the Military Hospital in Jeddah to provide an MRI machine to measure the iron content in the heart and liver, and we hope that This device will be available to us in the city soon.
# What are hereditary blood diseases?
Hereditary blood diseases are diseases that are transmitted from parents to children through inheritance, and they are many and many diseases, but the most important of them that cause serious problems are (sickle cell anemia and thalassemia, which is also called anemia of the Mediterranean basin), and it is widespread in most countries of the world, but it is It is concentrated in some regions, and the Kingdom is among these regions in which this disease is widespread, including the eastern and southern regions and the Medina region, where this disease is spread, especially falciparum.
What about sickle cell disease? What are its complications?
Sickle cell anemia is a hereditary disease in which parents are carriers of this disease, and thus it is transmitted through mating to children and this disease has multiple complications, as the patient suffers from severe recurrent episodes of pain that require returning to the hospital to take painkillers, and usually strong analgesics, including (narcotic) to relieve the pain. Thus, the patient goes to the hospital to receive treatment, and the patient also suffers from severe blood deficiency, needs a blood transfusion, and is exposed to brain clots, and therefore he is exposed to paraplegia or quadriplegia as a result of this disease.
# So the aim of adopting the premarital examination program is to protect the generation from these diseases?
The state - may God bless it - has approved this examination since 1425 AH due to the suffering that children suffer from hereditary blood diseases, as an order was issued by a royal decree from the Council of Ministers, and this program was started, and the examination became mandatory, and the Ministry of Health adopted the establishment of centers for pre-marital testing in All regions of the Kingdom, and the marriage contract is only concluded after presenting a report from the center that the man and woman have been examined, and the marriage official takes the report and the marriage is concluded.
# Have the numbers of patients decreased after the approval of premarital examinations?
Unfortunately, the numbers of patients for this disease have not decreased or decreased! It is estimated that 90% of those we meet are carriers of the disease, whether the young man or the girl before marriage, and the two types of this disease, and unfortunately the marriage continues, and they produce children with the disease. For us in the Medina area, there is still a lack of awareness of society, and the reason - according to his description - is due to the problem of customs and traditions on the part of marriage, and the lack of awareness of the seriousness of the disease, and many of them perform the examination in the last stages before the marriage ceremony, and it is difficult for them socially to break the engagement, and many of them set a date Network, the invitation has been distributed, and they decide to continue to consummate the marriage. # Are there cases that have been advised, continued to consummate the marriage, and fathered affected children? * Yes as cases of sick with sickle cell disease were advised before marriage, but they consummated the marriage, had their first child with sickle cell disease, and they went to the center.
# What about the other disease (thalassemia anemia) and its complications?
Thalassemia anemia is also a genetic disease similar to sickle cell anemia, in which the father and mother are carriers of the disease, and therefore it is transmitted to the children, and he said that a thalassemia patient cannot produce blood, and he has a deficiency in that, and he needs to donate blood frequently, blood transfusions to him every 3 weeks for life, and there is He has a marrow transplant treatment, but it is difficult and rare, and it has complications, and his treatment is for life by consulting a specialized blood transfusion center, such as the one we have in the city. And Dr. Hawsawi indicated that the continuous blood transfusion for a thalassemia patient results in high iron level, and this elevation causes problems for the patient, as it is deposited in body organs such as the heart, liver and pancreas. What causes them to have diabetes, or heart failure that leads to death, or liver failure, and blood transfusions are treated.
# What is the solution to treat this deficiency and lack of social awareness of the seriousness of the disease?
Society in general, some of them do not have knowledge of sickle cell anemia and thalassemia, and the solution is to pay attention to this matter, educate the community, and spread health awareness of this disease.
How many injured children attend the center?
The center reviews 120 children who receive regular treatment and blood transfusions, and the number of thalassemia patients is estimated at 100, and the number of sickle cell patients is 20 children, and there are other numbers who are referred to the outpatient clinics in the hospital who do not have severe complications.
# What methods do you follow to provide blood for thalassemia patients?
Blood is provided through the Central Blood Bank, and this is a suffering for Thalassemia patients, as their lives depend on the regular availability of blood, and we have a problem sometimes in the lack of the appropriate type for the patient - and praise be to God - the blood bank strives to provide blood for patients, and we find it difficult to Some seasons, as the Medina region is considered a region of Hajj and Umrah, and it needs a lot of blood, and sometimes there is a shortage of blood for these patients.
# How much is the value of the sums spent on a child with this disease?
The costs are very large, as we calculate the cost of blood transfusions and revision, and for the drugs that are given to reduce the proportion of iron is very expensive, as a patient with thalassemia exceeds 100,000 treatment per year, and a sickle cell patient is almost less expensive, between 50 and 60 thousand per year.
# Mention the negatives that you face in the center?
He said the problem that faces us for patients who have passed the age of childhood (more than 13 years) there is no place for them, and therefore we continue to treat them, and we seek to have an integrated center for the care of adult patients Because this disease continues, and the Children''s Hospital is approximately 13 years old, and we have 30-year-old patients who visit the center for blood transfusions.
# What are the solutions and suggestions that you see to avoid or reduce these genetic diseases in blood?
He said one of the future solutions is to enforce non-consummation of marriage for persons with the disease Because there is danger and suffering for the injured, and the Ministry of Health is studying a number of proposals to achieve the goal of pre-marital screening. Because if the doctor’s instructions and advice not to marry are followed, this means that this examination did not achieve its goal if the cases continued to increase. Because the goal is to combat and reduce this disease. He added also among the proposals that the examination takes place in advanced stages of life, such as high school students and students, so that both the young man and the girl know their status that they are carriers of the disease, or otherwise, and therefore when a young man approaches this girl, and knows that she is healthy and he is a carrier of the disease, that does not prevent marriage That is, if one of the parties is healthy and the other is a carrier of the disease, the marriage is never prevented.
# Will a patient with sickle cell anemia or thalassemia be deprived of marital life in the future?
No, never These patients are not deprived of their future marital life. He said that if a person who is a carrier of the disease is married to a girl who is not a carrier of the disease, and vice versa, if a person who is not a carrier of the disease is accompanied by a girl who carries the disease, then they will produce children who are not infected and healthy. Adding that a patient who visits the center will soon get married, and there is a positive aspect that we direct to those who have children with the disease that if the patient is treated and followed up, he lives a very normal life, and there are many wonderful models for people with genetic blood diseases, including doctors and engineers with the disease, who were able to study and obtain Have higher degrees, get married, and have healthy children.
# What are the efforts made to alleviate the suffering of those infected with these diseases?
