A man with moderate hemophilia becomes a tough man and becomes a doctor. Preventive treatment helps patients shine.
Blood cannot clot normally, hemophilia patients may suffer “spontaneous bleeding”
“Hemophilia” is a genetic disease belonging to the X chromosome and can be mainly divided into two types: A and B. There are 12 factors required for the human body to coagulate blood. Hemophilia A lacks coagulation factor VIII, while hemophilia B lacks coagulation factor IX. Most patients are male.
Because the blood cannot clot normally, the most common clinical manifestation is easy bleeding, especially within the joints. In addition to being difficult to stop bleeding after injury, severe cases may even cause “spontaneous bleeding.”
The severity of hemophilia is distinguished by the concentration of clotting factors in the body. Mild is between 5% and 30%; moderate is 1%-5%, and severe is less than 1%. According to health insurance statistics, the number of hemophilia patients in Taiwan who have received critical illness cards currently exceeds 1,500. There are 896 registered cases of home treatment as of 2020, of which 676 are hemophilia A patients, 552 are severe, and 552 are moderate. 68 people, 81 people were mild.
A man with moderate hemophilia became a doctor after working out for ten years and became a muscular man
Dr. Chen Hongrui, who is a patient with moderate hemophilia A, said that he once suffered intra-articular bleeding due to a sports injury, and the swelling and pain did not subside for 2 months. Later, he received coagulation factor injections to improve the symptoms. In order to increase physical ability and reduce joint injuries, Dr. Chen Hongrui began to cultivate fitness habits for more than 10 years now, protecting joints by improving muscle strength.
“Everyone may have spontaneous bleeding in their joints when doing exercise. Blood in hemophilia patients will accumulate in the joints and will not subside for a long time. It is recommended that if patients want to exercise, they can do it in a low-intensity, multi-group manner at the beginning. Train and improve your athletic ability step by step!”
Dr. Chen Hongrui used his own experience as an example to remind patients with hemophilia that if they want to engage in fitness exercises, they must first understand their muscle endurance and seek guidance from professional doctors and fitness coaches. It is best to increase the weight in a “step-by-step” manner to avoid injury. Recovery time may take 3-4 weeks. In particular, patients with severe hemophilia are more likely to have spontaneous bleeding, and preventive injection treatment before exercise is even more important.
Exercise intensity is difficult to control and easy to get injured. Elastic bands improve joint stability.
Liu Pengda, a physiotherapist at the Department of Rehabilitation Medicine at Changhua Christian Hospital, said that hemophilia often causes joint bleeding, which increases the risk of arthritis and joint replacement surgery in the future. Although exercise can improve muscle and joint problems, movement can put pressure on the joints and may lead to bleeding and trauma. The control of exercise intensity is the main reason why many hemophilia patients are afraid of bleeding and reduce exercise.
Physiotherapist Liu Pengda suggested that patients with hemophilia can use elastic bands with different action designs to exercise their entire body muscles at home, regardless of location. The elastic band should be firmly fixed before exercise to prevent it from falling off during exercise; do it step by step in small amounts and multiple times, from low intensity to high intensity. The movement process should be gentle and gentle. Movements that are too fast or too fierce will risk sprains.
Past research has pointed out that elastic bands combined with stretching and cardiorespiratory exercises can be used for 2 days a week for 6 weeks under the guidance of a physical therapist. There was no injury, pain, edema or bleeding at the end of the training. It improved joint mobility, muscle strength and cardiopulmonary function, showing that elastic band training is highly safe and can help improve joint stability and function.
Hemophilia treatment evolves from treatment as needed to preventive treatment
April 17th every year is World Hemophilia Day. Professor Shen Ming-jing of Changhua Christian Hospital and National Taiwan University Hospital, the “Father of Hemophilia” in Taiwan, said that Mr. Frank Schnabel of the Hemophilia Alliance himself is For patients with severe hemophilia A, due to incomplete treatment resources in their early years, obvious joint lesions occurred, resulting in the inability to walk with their waists straight.
Professor Shen Mingjing pointed out that in the past, the treatment of hemophilia was mainly to give blood plasma or inject coagulation factors “as needed treatment” when joint bleeding or other bleeding conditions occurred. Now the new treatment guideline is to regularly inject coagulation factors or new types of coagulation factors. Non-factor drugs are used for “preventive treatment” to maintain the lowest concentration of coagulation factors in the body.
Various treatments are covered by health insurance to help hemophilia patients move towards an ideal life
In recent years, there have been great breakthroughs in the treatment of hemophilia. Professor Shen Mingjing explained that there are now a variety of long-acting coagulation factors covered by health insurance, and their longer half-lives can reduce the number of injections. In addition, there are also standard half-life coagulation factors, which provide the highest concentration of coagulation factors in the body for many times, and are suitable for patients who are active and love sports. The new long-acting non-coagulation factors are injected subcutaneously, which is another breakthrough new application.
Professor Shen Mingjing pointed out that the development of hemophilia treatment has allowed more patients to pursue their ideal life. Nowadays, there are many people studying for doctorates and masters. For example, Dr. Chen Hongrui’s success in becoming a doctor can be said to be an honor for hemophilia patients. We hope that more hemophilia patients will shine in society in the future.
As for exercise, there are now mobile software that can check the prediction data of the concentration of coagulation factors in the body, helping patients arrange appropriate activity intensity, which can reduce joint bleeding caused by exercise or strenuous activities.
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