Increasing awareness helps hemophiliacs participate more in social life

By Gozde Bayar

ANKARA (AA) - Raising awareness of hemophilia can increase the participation of hemophiliacs in social life, according to those suffering from the bleeding disorder.

“Like every disease, the stigma surrounding hemophilia is one of the biggest social problems. Although it is not contagious, people may hesitate when they first hear about it mainly due to a lack of information,” Caner Dadak, a 33-year-old hemophiliac, told Anadolu.

Hemophilia is a rare genetic bleeding disorder in which the blood does not clot properly.

Dadak, who is a member of the Hemophilia Society of Türkiye, said his association not only informs health professionals, hemophiliacs and their families through scientific studies but also continues to work to raise awareness of hereditary bleeding disorders among all segments of society.

“We can see the results of these studies by raising individuals who grow up healthily under proper treatments, reach their goals in education and business life, establish families, realize their dreams and do not stay in need of care but on the contrary produce and add value to the society,” Dadak added.

Dadak, who was diagnosed with hemophilia when he was seven months old, said a hemophilic child in a classroom can be alienated by their friends.

“If it is not prevented, this situation can cause problems that can start with isolation from society and extend to psychiatric diseases,” he said on the occasion of World Hemophilia Day.

Although hemophilia can reach life-threatening levels, it is a chronic condition that will not make the person separated from other healthy peers under proper treatment and care, he said.

Regarding the side effects of bleeding, he said it can damage the joints, which gradually restricts the movements of the person in the long term.

“When the necessary treatments are not applied, they can reach advanced dimensions and make the person dependent on devices such as a cane, walker, wheelchair or bed,” he said, adding cities that are not disabled-friendly could make problems with steep ramps that are difficult for wheelchair-bound individuals to navigate and not having elevators.

- Risk of bleeding affects psychology

Fatma Bali, whose son Omer is a hemophiliac, said they came to know of his condition as there was no coagulation at the place where blood was taken from his heel after birth.

“We were a lucky group who were diagnosed early due to postpartum hemorrhage. We learned that our child was hemophilic without being exposed to more risky bleeding, and as we became more aware of the disease, we had a protective life,” Bali said.

With a preventive treatment method applied over the past 15 years, children can continue their daily lives like healthy individuals without any joint damage and excessive bleeding, she said.

“But the risk of bleeding is always here, and this situation inevitably affects us psychologically,” she said, adding that her son was hospitalized for 23 days due to heavy internal hemorrhage when he was in primary school.

Noting that this trauma created some restrictions in his social life, she said her son could not attend physical education lessons and was unable to play football and basketball.

Omer’s childhood period was difficult because of regular hospital visits for injections every three days, problems in finding vascular access and decreased contact with family and friends.

Fatma said her son receives education at Uskudar University’s Media and Communication Department.

- Hemophilia occurs in about 1 of every 5,000 male births

Bulent Zulfikar, the head of the Hemophilia Society of Türkiye, said they deal with each patient one by one and have planned a personalized treatment in the last decade.

“The first step of treatment is to replace the missing factor (protein) in the body. The main principle of the treatment is to give it in the right dose at the right time,” Zulfikar said.

Among the new medical possibilities, the abundant production and availability of factor concentrates for replacement are at the forefront, he added.

This was followed by the production of factor concentrates with a longer half-life, a longer stay in the blood, and longer anti-bleeding properties with almost zero side effects, he said.

Regarding symptoms, he said they may begin following birth.

“Bleeding from the umbilical cord, blood leakage from the place where blood samples are taken for screening tests and bruising on the body are the first symptoms,” he said.

As for hemophilia inheritance, he said a faulty gene is located on the X chromosome in the most common types of hemophilia.

Everyone has two sex chromosomes, one from each parent. Females inherit an X chromosome from the mother and an X chromosome from the father. Males inherit an X chromosome from the mother and a Y chromosome from the father.

“When it is present in females, it is passed on to the next generations. Women are mostly silent carriers without showing symptoms,” Zulfikar said, adding the change in the gene results in the fault or absence of the protein it encodes and determines its shape and function.

Hemophilia occurs in approximately one of every 5,000 male births. More than 1.1 million men around the world have the inherited bleeding disorder, while this number is 80,000 in Türkiye, he added.