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World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

author:Qingdao Haici Medical Group

April 17 is World Hemophilia Day, with the theme "Knowing Bleeding Disorders, Proactive Prevention and Treatment". Fan Chuanbo, member of the Party Committee, vice president and director of the hematology diagnosis and treatment center of Haici Medical Group, introduced that hemophilia is an X-chromosome-linked recessive hereditary bleeding disorder, the genetic gene is located on the X chromosome, and the onset is related to gender.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Clinical presentation

It often manifests as spontaneous bleeding or bleeding after mild trauma, mainly in the joints, muscles, and deep tissues, and may also cause bleeding in the gastrointestinal tract, urinary tract, central nervous system, and bleeding after tooth extraction. Recurrent bleeding can lead to joint deformity and pseudotumor formation if left untreated.

Although there is no cure for hemophilia, genetic screening can cut the genetic chain of hemophilia at the root. Advocate that high-risk groups should take the initiative to receive genetic counseling, genetic screening and other services.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Treat:

1. Factor replacement therapy

The main treatment for hemophilia is intravenous coagulation factor replacement therapy, which is "what is lacking and what is missing", and patients need to receive clotting factor replacement therapy for life.

On-demand treatment: In acute bleeding, coagulation factor replacement therapy is still the most effective hemostatic measure for acute bleeding, and the principle is early, adequate, and adequate treatment.

Prophylactic treatment: Because on-demand treatment is only post-hemorrhage treatment and cannot prevent joint disability caused by recurrent bleeding in severe patients, prophylactic treatment is particularly critical because the goal is to maintain normal joint and muscle function. Prophylaxis is the treatment of choice for pediatric patients.

2. Non-factorial therapy:

Emecizizumab is a bispecific monoclonal antibody that restores the physiological coagulation pathway by mimicking the cofactor function of FVIII.a. It has been approved in China for routine prophylactic treatment in patients with HA and FVIII. inhibitors.

Gene therapy: The world's first gene therapy drug for hemophilia B was approved by the U.S. Food and Drug Administration.

What problems should hemophilia patients pay attention to in their daily life?

1. Patients should pay attention to avoid bumps and strenuous exercise in their daily life, and their daily behavior should be gentle to prevent bleeding caused by trauma.

2. Do not use sharp objects unless necessary, and if you must use them, you need to be extra careful during use and wear protective gloves.

3. When there is a tendency to bleed, the patient should try to stay in bed and avoid outdoor activities. Patients who have other health problems during their lives should be treated with oral medications and avoid intramuscular injections.

4. It is very important for children with hemophilia to maintain good oral hygiene to prevent gum bleeding caused by periodontitis and caries, and to avoid excessive oral treatment as much as possible. Regular check-ups begin before the child is 3 years old.

5. Daily activities and exercises can promote physical fitness and physical function, strengthen muscle strength, and promote body coordination, so as to better protect joints, reduce joint bleeding and joint damage. People with hemophilia should be encouraged to engage in non-confrontational exercises, such as swimming, walking, golf, badminton, cycling, table tennis, etc. It is best to avoid sports where the body is strongly opposed and collided, such as football, rugby, boxing, wrestling, and high-speed sports.

A team of experts

Chief Expert

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Zhao Hongguo

Chief physician

Chief expert, chief physician, professor, doctoral supervisor of the Hematology Committee of Qingdao Association of Integrative Traditional and Western Medicine. He is also the chairman of the Lymphoma Professional Committee of Qingdao Anti-Cancer Association, the honorary chairman of the Hematology Professional Committee of Qingdao Medical Association, the standing member of the Lymphoma Professional Committee of the Chinese Anti-Cancer Association, and the member of the Leukemia Lymphoma Group of the Hematology Professional Committee of the Chinese Medical Association. He is also an editorial board member of the Chinese Journal of Hematology and the Journal of Clinical Hematology. He has trained more than 50 master's and doctoral students, participated in the completion of 6 projects of the National Natural Science Foundation of China and provincial and ministerial levels, published more than 120 papers in various journals, and published 6 monographs

Specialty: Engaged in clinical work for 40 years, he has rich experience in the diagnosis and treatment of anemia, lymphoma, myeloma, leukemia, hematopoietic stem cell transplantation, bleeding disorders and other blood diseases, as well as unexplained fever and other diseases.

Director of the Center

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Fan Chuanbo

Chief physician

Member of the Party Committee of the Group, Vice President, Director of the Hematology Diagnosis and Treatment Center, Director of the Department of Internal Medicine, Chief Physician, Doctor of Medicine, Master Tutor. He is also the chairman of the Hematology Committee of Qingdao Association of Integrative Traditional and Western Medicine, the vice chairman of the Hematology Branch of Qingdao Medical Association, the Standing Committee of the Hematology Branch of the China Association of Traditional Chinese Medicine, the Standing Committee of the Hematopoietic Stem Cell Transplantation and Cell Therapy Professional Committee of the China Medical Education Association, the Standing Committee of the Hematology Professional Committee of the Shandong Medical Doctor Association, and the member of the Hematology Branch of the Shandong Medical Association. He has presided over the completion of 3 provincial and municipal projects and published a number of papers.

Specialty: Diagnosis and treatment of acute and chronic leukemia, lymphoma, multiple myeloma, myelodysplastic syndrome, aplastic anemia, immune thrombocytopenia and other diseases, and has rich experience in hematopoietic stem cell transplantation, especially microtransplantation in the treatment of elderly acute myeloid leukemia.

A team of experts

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Tian-hsien

Deputy Director of the Department of Hematology

Deputy Chief Physician

Deputy Director of the Department of Hematology, Deputy Chief Physician. He is also a member of the Hematopoietic Stem Cell Committee of the China Medical Education Association, a member of the Stem Cell Therapy Expert Committee of the Shandong Association of Integrative Traditional and Western Medicine, a member of the Leukemia Expert Committee of the Shandong Society of Clinical Oncology, a youth member of the Hematology Branch of the Shandong Medical Doctor Association, a member of the Blood Branch of the Qingdao Association of Integrative Traditional and Western Medicine, and a youth member of the Hematology Branch of the Qingdao Medical Association. He has participated in 3 provincial and municipal projects, published many papers and 3 SCI articles.

Specialty: Master the diagnosis and treatment of various anemia, thrombocytopenia, blood cytosis, coagulation dysfunction and other diseases, especially good at the standardized diagnosis and treatment of various lymphoma, myeloma and other plasma cell diseases, acute and chronic leukemia, myelodysplastic syndrome and other malignant blood diseases and targeted drug treatment. He also has a good understanding of some rare diseases of the blood system.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Wang Haixia

Deputy Director of the Department of Hematology

Deputy Chief Physician

Deputy Director of the Department of Hematology, Deputy Chief Physician. Master of Medicine, graduated from the Department of Hematology, Tongji Medical College, Huazhong University of Science and Technology in 2012. He is also a member of the Hematopoietic Stem Cell Transplantation and Cell Therapy Professional Committee of the China Medical Education Association, a member of the Lymphoma Professional Committee of the Shandong Pain Medicine Association, a member of the Geriatric Hematology Professional Committee of Shandong Province, and a member of the Qingdao Hematology Association of Integrated Traditional Chinese and Western Medicine. He has participated in 3 provincial and municipal research projects and published many papers, including 3 SCI papers.

Good at: Engaged in clinical work for more than 10 years, committed to the medical teaching and research of blood system diseases, good at the standardized diagnosis and treatment of acute and chronic leukemia, lymphoma, multiple myeloma, myelodysplastic syndrome, coagulation diseases, various anemia and other blood diseases, master the hematopoietic stem cell transplantation technology, and have rich experience in the diagnosis and treatment of difficult cases of blood diseases.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Wang Zhaohui

Deputy Chief Physician

Deputy Chief Physician, graduated from the School of Medicine of Qingdao University, concurrently serves as a member of the Blood Branch of the China Association of Traditional Chinese Medicine, a member of the Blood Branch of the Shandong Association of Integrative Traditional and Western Medicine, the vice chairman of the Lymphoma Professional Committee of the Qingdao Anti-Cancer Association, the secretary of the Blood Branch of the Qingdao Association of Integrative Traditional and Western Medicine, and a member of the Blood Branch of the Qingdao Medical Association.

Specialty: Treatment of various leukemia, lymphoma and other hematologic malignant diseases, refractory recurrent thrombocytopenia, aplastic anemia, etc.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Han Bo

Deputy Chief Physician

Deputy Chief Physician, Doctor of Medicine, Outstanding Young Medical Talent of Qingdao, Member of Shandong Geriatric Hematology Professional Committee, Youth Committee Member of Qingdao Hematology Society, Member of Lymphoma Professional Committee of Qingdao Anti-Cancer Association, and Member of Qingdao Hematology Society of Integrated Traditional Chinese and Western Medicine. He has published 3 SCI papers, more than 10 national papers, and presided over 2 municipal bureau-level projects. He went to the Hematopoietic Stem Cell Transplantation Center of Peking University People's Hospital for training, and was proficient in the treatment technology of hematopoietic stem cell transplantation for malignant hematological tumors.

Specialty: Accurate diagnosis and treatment of hematological tumors such as leukemia, multiple myeloma, and myelodysplastic syndrome. He is especially good at standardized diagnosis and comprehensive treatment of malignant lymphoma.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Hong Qing

Deputy Chief Physician

Deputy Chief Physician, graduated from the School of Medicine of Qingdao University in 1999, went to the Blood Disease Hospital of Tianjin Institute of Hematology in 2006 for further study, obtained the National Psychological Counselor Level 2 Certificate in the same year, obtained the Psychotherapist (Intermediate) in 2007, completed the training examination of Qingdao Western Middle School in 2018, participated in the Shandong Province Western Studies Backbone Talent Training Program in the same year, participated in the National Western Studies Backbone Talent Training Program in 2019, and published many papers in SCI and national core journals. Using Western medicine, Chinese medicine and psychological knowledge to develop a comprehensive and individualized treatment plan for patients. He is also a member of the Hematology Professional Committee of Qingdao Association of Integrative Traditional and Western Medicine and a director of Qingdao Psychological Association.

Specialty: The use of traditional Chinese and Western medicine in the treatment of chronic diseases of the blood system, in the treatment of aplastic anemia, Henoch-Schonlein purpura, primary immune thrombocytopenia, myeloproliferative tumors have achieved good results, in leukemia, myelodysplastic syndrome, lymphoma, myeloma perichemotherapy and after chemotherapy application of traditional Chinese medicine dialectical intervention, to achieve the effect of reducing toxicity and increasing efficiency, improving physical fitness, and improving quality of life.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Wang Jiuhe

Deputy Chief Physician

Deputy Chief Physician, Bachelor of Medicine, graduated from Linyi Medical College, majoring in clinical medicine. He is also a member of the hematopoietic stem cell transplantation and cell therapy subspecialty committee of the Hematology Branch of Shandong Medical Doctor Association, and a member of the Qingdao Hematology Association of Integrated Traditional Chinese and Western Medicine. He has 2 invention patents and published more than 10 papers.

Specialty: Mainly good at diagnosing and treating various anemia, idiopathic thrombocytopenic purpura, multiple myeloma, myelodysplastic syndrome, lymphoma, acute leukemia, chronic leukemia and other hematological diseases.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Liu Junling

Deputy Chief Physician

Deputy Chief Physician, graduated from Zhejiang University of Traditional Chinese Medicine, and concurrently serves as a member of the Hematology Professional Committee of Qingdao Association of Integrative Traditional and Western Medicine. As the backbone of traditional Chinese medicine clinical technology in Shandong Province, he went to Xiyuan Hospital of China Academy of Chinese Medical Sciences for half a year for further study, and was the head of the group's traditional Chinese medicine aplastic anemia outpatient clinic. He has published 8 academic papers.

Specialty: Combination of traditional Chinese and Western medicine in the treatment of iron deficiency anemia, primary immune thrombocytopenia, Henoch-Schonlein purpura, polycythemia vera, essential thrombocythemia, aplastic anemia, myelodysplastic syndrome, leukemia, lymphoma and other malignant blood diseases before and after chemotherapy.

World Hemophilia Day| Caring for the "glass man" makes life no longer fragile

Zhang Zechuan

Deputy Chief Physician

Deputy Chief Physician, Master of Medicine, joined the work in 2011, worked in the Department of Hematology, the Fifth Medical Center of the PLA General Hospital, and has been engaged in clinical work in hematology for a long time, with rich clinical experience. Participated in a provincial clinical research project, published 1 SCI article, and 4 domestic core journals.

Specialty: Hematopoietic stem cell microtransplantation for acute leukemia and autologous hematopoietic stem cell transplantation for lymphoma and myeloma.

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