• Living with Hemophilia

    This picture of the colorful world under the sea radiates vitality and optimism. Just like the young artist who painted it.

 

“The fishes are my friends,” explains 11-year-old Lu Zhong Qian from China. And his mother, Wang Li Xia, is rightly proud of her son’s artistic talent. It won him a prize in a painting competition. “My son paints differently to other children of his age,” the mother says. “His pictures express the desire for a normal, harmonious life free of pain.”

400,000

people worldwide are living with hemophilia.

L u has hemophilia. The young Chinese boy was diagnosed with the blood disorder when he was very small. When Lu started to crawl at the age of eight months, his parents were surprised how often he developed bruises. Lu’s blood lacks a specific protein that forms part of the coagulation system. If this protein is present in insufficient quantity, or not at all, the coagulation cascade in the blood is interrupted. Blood coagulation cannot function efficiently. Minor internal injuries can cause major bleeding into the muscles or joints.

How blood coagulation works

A normal life with the help of medication

The 11-year-old knows how to live with the limitations imposed by his condition. He tries to avoid collisions and injuries. Before he leaves his parents’ apartment on the fourth floor he bandages his ankles to prevent injury.

Wang Li Xia is rightly proud of her son Lu Zong Qian

But Lu’s parents also had to learn to cope with their son’s condition. “Like all parents we had his future mapped out in our minds. My husband dreamed of Lu going to college,” recalls Lu’s mother, Wang Li Xia.

After they had been given the diagnosis, Lu’s parents were in despair and felt very isolated. Lu’s mother had to take him to the hospital on many occasions. Every visit to the emergency room after he had injured himself filled her with fear. The family finally found a doctor with experience of the hemophilia at the Beijing Children’s Hospital. He told the mother that Lu would be able to lead a nearly normal life with the help of medication. Later on he would even be able to marry and have healthy children. That gave Lu’s mother the strength to go on.

Like all parents we had his future mapped out in our minds. My husband dreamed of Lu going to college.

What children living with hemophilia hope for

Today Wang Li Xia has built her life around caring for her son. She would like to pass on her experience and knowledge to as many affected people as possible. Her dream is to set up a self-help group so that parents can meet up regularly and exchange information.               

Hämophilie in Asien und weltweit

Nanjing Road in Shanghai, China

Hemophilia in Asia

Worldwide some 400,000 people are living with hemophilia. Seventy-five percent of people with hemophilia don’t even know they have it, or have no access to appropriate medical care.

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According to official figures, an estimated 70,000 to 100,000 people have hemophilia in China, yet currently fewer than 5 percent of them are receiving proper treatment. The alarming potential number of people with hemophilia in China led the Chinese Ministry of Health to set up a nationwide hemophilia information and management system in 2010. This project aims to establish 40 hemophilia treatment centers in 30 cities and provinces within a five-year period so that standardized diagnosis and therapy can be provided for patients.

In August 2013, Wang Li Xia and her son participated in the Asia Pacific Hemophilia Camp in Qingdao, China, so that they could learn more about the disorder and meet new people in the same situation. Thirty-five children aged between seven and 17, their parents and medical professionals attended the camp, which was supported by Bayer HealthCare. Lu made new friends at the camp, and his mother now knows that she doesn’t need to feel as if she is alone with her son’s disorder.

Wang Li Xia talks about her son’s illness

Her dedication and the medical progress that has been made are enabling Lu to experience childhood in a way that would have been impossible just a few years ago. Wang Li Xia is quite certain that “our children will only be happy if we parents are optimistic.”               

Click here for more information about how hemophilia is passed on

Hemophilia A and B are inherited bleeding disorders, the gene for which is on the X chromosome. The X chromosome carries the genetic information needed to form the blood coagulation factors VIII and IX.

In affected women, the defective gene can be overridden by an intact gene on her second X chromosome. In this case the gene on the second X chromosome is dominant over the defective, recessive gene on the other X chromosome – and the woman will generally appear to be healthy, though at times she could have bleeding symptoms in connection with surgery, trauma or during menstrual cycles (carrier state).

She will only have hemophilia if the genes on both of her X chromosomes are defective.

The disease manifests in men if the gene on the X chromosome that is responsible for forming blood coagulation factors is defective. The Y chromosome in men does not carry this gene and is therefore unable to compensate for the gene defect on the X chromosome.