المملكة: Thalassemia is a long journey of challenges … and genetic therapy opens the doors of hope

Specialists in hematology and medical genes stressed that Thalassemia is still a real challenge to the health system and society, despite the great efforts made by the Kingdom in awareness, examination and treatment programs.
In their interview with “Today” on the occasion of the International Day of Ceramicia, they explained that the chronic genetic disease, which affects hemoglobin in the blood, needs a comprehensive response that starts from early examination and does not end at medical treatment, but also includes psychological and social support and raising the level of societal awareness.

The most prominent challenges of patients

Dr. Hani Muhammad Amirallah Al -Afghani, a consultant of medical and cancerous genes, explained that the most prominent challenges faced by Thalassemia patients in the Kingdom are to rely on regular blood transfusion every 3 to 4 weeks for life, which raises the risk of iron accumulation in the body and the damage of vital organs.

He added that the high cost of iron removal is an additional burden, especially in areas where medicines are not easily available.

He pointed out that some patients suffer from social stigma as a result of misconceptions about the fact that the disease is infectious or associated with a genetic defect, which causes psychological and social isolation for patients and their families.
Dr. Al -Afghani stressed the importance of early examination, especially before marriage, noting that the examination is mandatory since 2004, but some husbands do not adhere to its results. He also stressed the necessity of conducting tests in the event of a family history, or when symptoms of anemia such as pallor or delayed growth appear.
With regard to health education, he called for the intensification of awareness campaigns through the media, the inclusion of information about Thalassemia in the curricula, and the organization of awareness seminars in public places. He also praised the pivotal role of specialized societies, such as the Saudi Thin -Cerema Association, in supporting patients and financing research. He concluded his speech by emphasizing that Thalassemia is not a restriction if health care and community awareness are available, while calling for enhancing genetic examination programs in peripheral areas, and investing in genetic therapy that opens new horizons for treatment.

The Kingdom’s efforts to raise awareness of snowmia

For her part, Dr. Hanan Hamad Al -Dailaj, a consultant of hematology at Imam Abdul Rahman bin Faisal University, said that the International Day of Cerema is a humanitarian occasion that highlights the suffering of thousands of patients around the world, and calls for solidarity with them and enhancing prevention efforts.

She added: “Thalassemia is not just a defect in the production of hemoglobin, but rather a long journey of continuous treatment and periodic dates and dealing with complex medical, psychological and social complications.”
She pointed out that the Kingdom has made important steps in raising awareness and applying mandatory examination before marriage, which led to a reduction in the number of high -risk marriages by up to 60% within a few years.
However, some challenges are still in place, including the delay in conducting tests or ignoring their results under the pressure of social habits. She called for intensifying community education by integrating awareness in education, and organizing workshops and seminars in which families and patients themselves participate to transfer their experiences to others.
She also stressed the importance of psychological support by providing specialized guides inside hospitals, and establishing family support groups. She said that supporting scientific research and genetic therapy must top the priorities of health authorities, as these areas represent the true hope of those with a radical improvement in the quality of their lives.

The most prominent symptoms and the most important advice

As for the specialist Hanan Al -Ghamdi, from the Department of Hematology and Schools, she indicated that Thalassemia is also known as “Mediterranean Anemia”, and it occurs due to a genetic imbalance that leads to a low level of hemoglobin in the blood, which causes chronic anemia and a direct effect on oxygen in the body.

She said that the symptoms depend on the severity and type of Thalassemia, including pallor, fatigue, delayed growth, and infection repetition. She added: “The injured need a permanent medical follow -up that includes regular blood transfusion, and excess iron treatment, and in some cases, stem cell transplantation.” She warned of the importance of early examination, especially in the event of a family history of the disease, noting the possibility of conducting a genetic examination before marriage or during pregnancy, which helps families make deliberate decisions.
It also provided a set of tips for the injured, including adhering to periodic dates, not taking iron supplements that contain iron without consulting a doctor, proper nutrition, eating folic acid, calcium and vitamin DAnd care for personal hygiene and preventive vaccines, especially for those who have been removing the spleen.

Social and psychological difficulties

Dr. Lulwa Saad Al -Rajeh, a consultant of blood diseases and faculty member at Imam Abdul Rahman bin Faisal University, said that Thalassimia often begins in early childhood with symptoms that include pall

She added that patients face challenges that go beyond the medical aspect, including social and psychological difficulties, and the need for acceptance and societal integration, especially between children and adolescents.
She praised the Kingdom’s efforts to enhance pre -marriage examinations, support awareness programs, and provide specialized in hospital care. It also called for the involvement of influencers and imams of mosques in spreading awareness messages, and establishing centers of psychological and social support that contribute to alleviating the suffering of families.

Genetic therapy reflects the future

In a modern scientific aspect, a biotechnology specialist, Kholoud Al -Rubaie, revealed a new scientific achievement in Saudi Arabia, which is the application of “Krisper” technology for genetic treatment for the first time on a child with snowmia, using the “Qusjafi” medicine, which led to his dispense with full blood transfusions.

She said that genetic therapy represents a major shift in the future of Thalassemia treatment, and depends on adjusting the gene responsible for the production of hemoglobin to produce a sound version of it, noting that the Saudi Food and Drug Authority approved the medicine to treat patients from 12 years and more. She emphasized that this achievement represents a qualitative shift in Saudi medicine, and sends hope to hundreds of people with the possibility of their suffering radically.

Recommendations

1. Promote before marriage genetic examination, and expand them to include peripheral areas.
2. Facilitate the arrival of drugs for removing iron and providing them for free or at subsidized prices.
3. Insert comprehensive information about Thalassemia in the curriculum.
4. Organizing awareness and community seminars with the participation of patients and doctors.
5. Establishing specialized psychological and social centers to support families.
6. Encourage scientific research in the field of genetic therapy and stem cells.
7. Motivating society to break the stigma and accept it as a medical condition that does not defect the person.
8. Linking health societies to global experiences in disease management.
9. Involving media and influencers in spreading the culture of early examination.
10. Enhancing communication between affected families through specialized support and guidance groups.