Doctor Chulalongkorn gave information about the disease that bleeds easily and is difficult to stop. ‘Hemophilia’ (Hemophilia), a disease that is inherited. with guidelines for protection
Bleeding disease is difficult to stop. ‘Hemophilia’ (Hemophilia) is a disease that is inherited. The nature of the disease is Patients tend to bleed easily. Long and difficult to stop from infancy or early childhood inability to control the outflow of blood whether the wound is visible or by organs in the body The bleeding symptoms of hemophilia are characterized by bleeding in the joints and muscles. which in addition to causing pain to the patient It is also followed by the opportunity to have disabilities. and although it is a disease that cannot be cured but if properly treated since childhood I will be able to live hardly any different from the average person. able to have a good quality of life and live happily in society
The doctor pointed out a preventive treatment, painless, and not a disability.
Assoc.Prof.Darin Sosothikul, M.D. Head of Pediatric Hematology and Oncology Division Department of Pediatrics Faculty of Medicine Chulalongkorn University Discussing the treatment of hemophilia by injecting factor replacement therapy into the bloodstream (replacement therapy), simply called “factor injections”, there are currently 2 types of hemophilia treatment guidelines in Thailand: Episodic treatment is the administration of factor VIII in hemophilia A and factor IX in hemophilia B. B) Both of them are important factors that help in hemostasis. which if the patient is deficient in these factors Will result in bleeding easily, difficult to stop, especially in patients with severe disease, will have a condition that bleeds by itself Even if the body does not have any bumps, it can happen about 6-12 times or 2-4 times a month. which indicates that the patient has a chance to bleed on their own bleeding in the joint or deep muscles
This type of treatment is an injection after the patient has had bleeding in the joints. Causing the blood to still pool and remain in the joints resulting in degenerative joints similar to those of the elderly Patients who unfortunately bleed more than 3 times a year in the joints make it more likely to have joint disabilities. Currently, doctors will not recommend this method of treatment. especially child patients Because of the consequences when growing up as an adult, it is have disabilities The current standard treatment recommended by the World Federation of Hemophilia is prophylaxis treatment. But your doctor will give you a factor on a regular basis. Approximately 1-2 times a week to keep the level of the factor higher than 1 all the time, so it can prevent bleeding. which is a good result of preventive treatment before symptoms occur It will help the appearance of the patient’s joints to be close to normal people. not a disability Especially for patients who have been treated since the age of 3, but going to the hospital to inject the factor every week is not very convenient. It requires strict cooperation from parents. in helping to inject the factor itself at home
Assoc. Prof. Dr. Darin added that “Home care factor injections are the best way. but must be trained by the medical team and nurse until confident When the child is alarmed by stiffness or pain and received the factor injection at that time The bleeding will stop immediately. But if coming to the hospital which takes time to travel It may take several hours for the factor to be injected. cause bleeding in the joint From being issued in a small amount of only 5 cc., it will increase to 200 cc. Compared to the picture, it is 1 can of soft drink by Chulalongkorn Memorial Hospital. Has focused on having 90% of patients able to inject themselves at home
In the past, there has been an outbreak of the COVID-19 virus. cause patients to have obstacles in coming to the hospital Parents were worried that If coming to the hospital, then the patient may have a chance to get COVID. Therefore, there are more attempts to self-inject. Therefore, we have sent a team of nurses and medical personnel to visit patients at home. Teach you how to inject factor Until making about 20 families of patients who can inject themselves. Resulting in 90% of the number of target groups being injected by parents, there may be some obstacles or limitations. Because the child is quite difficult to find a blood vessel if the needle is pierced 2-3 times and it fails. need to come to the hospital The hospital has facilitated communication channels through the Hotline, as well as the Line application that can communicate with a team of doctors and nurses as well. Which the doctor himself understands that it is not easy for parents to have to pierce the syringe on the child But due to preventive treatments that benefit patients, some people bleed only once a year. Parents are happy and proud to play a part in keeping the child from bleeding.”
“During the recent outbreak of COVID-19, hemophilia patients were recommended to be vaccinated against COVID since the beginning of the outbreak because they were classified as a risk group. But before vaccination, factor must be injected 1 day in advance or injected that morning. After vaccination, the area must be pressed for at least 10-15 minutes, so there is no bleeding problem.”
Hemophilia can still play sports, exercise, and live outside.
“Bleeding easily, especially after a concussion. In the past, parents of young patients were worried about not allowing their children to do outdoor activities until they lost some opportunities and learning skills, such as motor skills or exercise, which are important. a lot Because proper exercise will help strengthen the muscles around the joints. Especially exercising the muscles around the knee joint. That can be done by yourself at home, such as gently contracting the front thigh muscles by holding the contraction and counting 1-5 and repeating 10 times per round, or swaying the ankle up and down and turn the ankle in and out in a circle.”
As for the hospital itself, it must advise parents that If the protective factor has been injected Hemophilia patients can play sports like normal children. But must wear protective equipment. If riding a bicycle, you must wear a helmet, knee pads, elbow pads, or may choose to play sports that do not affect high impact movements such as running, walking, swimming, table tennis, badminton. The sports that should not be played are boxing and football. For the need to adjust the home environment to prevent accidents. In this matter, one must understand the nature of the boy who is already mischievous. Just be careful not to play or be close to sharp objects. or attach the rubber edge along the corner of the table It will reduce the chance of going to the shock until it bleeds.
Drive with Love overcomes all obstacles
Assoc. Prof. Dr. Darin thinks that “many families with children with hemophilia will know that If given the proper protection factor Get replacement when bleeding is timely. It will improve the quality of life of patients. Can do anything close to normal people go to school or work Based on cooperation and understanding of both patients and families. But for new case patients In a family that has never had a genetic history of this disease before, because 1 in 3 patients today are caused by a mutation. Of course, there must be feelings of stress and regret. Worried that their loved ones will have to live with this disease for the rest of their lives. Hemophilia is just one disease. If everyone in the family uses love and care to make the child step over to become a normal child or as close to a normal child as possible. as well as planting trees will make your beloved child grow up to be an adult and live a life without obstacles Love and understanding of the family will drive in every matter. How to make your child successful? must participate in injecting the factor into the child Or have time to take the injection to the hospital Adequate bleeding care is available. To prevent complications to the joints and muscles to a minimum. so that the child can live and grow normally Confident that this is a guideline that will help the child move forward without any obstacles.”
Share experiences, learn and understand the disease at the “Chula Hemophilia Day” event.
Assoc. Prof. Dr. Darin emphasized the role and duty of physicians that “In addition to treating the disease will also have to encourage Help promote health and care for patients in a holistic way. Especially patients with long-term chronic diseases. must find a way to tell him that Everyone’s life is valuable. You must not think that having this disease will make you live or do less than the average person. In addition, the medical personnel team of Chulalongkorn Memorial Hospital Patients are regularly followed up and an annual “Chula Hemophilia Day” event is held. In the event, there will be hemophilia patients joining the discussion. get to know each other It was the creation of a hemophilia family that made me realize that no one is alone There are activities that teach younger siblings about the use of factors. or sometimes willing to be an experimental mannequin for the youngsters to practice injections There are also motivational activities for patients to learn to live with this disease with understanding.
For this year’s “Chula Hemophilia Day” event, it was held under the theme “Fit 4 fun, hit style… fit like a boy” linked to the theme of the World Federation of Hemophilia. How to make hemophilia patients have strong muscles or joints? At the event, in addition to organizing a discussion to update patient benefits from the National Health Security Office (NHSO), there were also gurus. The entire medical team treating hemophilia physical therapy doctor and sports medicine specialists who have experience and expertise in treating patients with this disease Let’s recommend proper exercise. Helps to have strong muscles around the joints. cause less bleeding along with inviting a group of patients who exercise regularly Let’s talk and share experiences for the children to learn on April 23, 2023 from 8:00 a.m. to 1:00 p.m. at Meeting Room 302, 3rd floor, Rattanawittayapat Building. Chulalongkorn Hospital Those interested in attending can ask for more details at Hemophilia Patients Club of Thailand Tel. 02-200-4105
