What happens when a hemophiliac develops a disability?

Hemophilia is an X-chromosome-linked recessive hereditary hemorrhagic disease, with recurrent joint and muscle bleeding as its main clinical manifestation, which is also the main cause of disability in hemophiliacs. In the past, due to medical insurance and drug supply, hemophiliacs in China did not have the conditions to implement preventive treatments, resulting in about 70% of the patients having different degrees of disabilities in adulthood. According to the statistics of 1158 hemophiliacs in Jiangxi by Nanchang Friends of Blood Public Welfare Association, 2.50% of these patients have Grade 1 disability, 11.66% have Grade 2 disability, 7.86% have Grade 3 disability, 5.44% have Grade 4 disability, 42.66% have limb dysfunctions but have not done the identification of their grades, and only 15.37% of these patients do not have any disability. It can be seen that at present, the vast majority of hemophiliacs have combined disabilities, so what should hemophiliac patients do if they have disabilities? First of all, it is necessary to prevent the occurrence of disability or the aggravation of disability. In recent years, with the improvement of conditions such as medical insurance and drug supply, many patients already have various conditions to carry out preventive treatment among hemophiliacs. It is recommended that this group of patients be actively engaged in preventive treatment in order to reduce the incidence or severity of disability. Secondly, it is important to develop the habit of dynamically evaluating joint function. Regular assessment of joint function in hemophiliacs can provide a basis for the development or adjustment of preventive treatment programs and the management of joint lesions. Imaging evaluation of hemophilic joint disease is the primary means of monitoring hemophilia prophylaxis, progression of joint disease, and prevention of serious joint complications. Examination methods include x-ray, CT, magnetic resonance imaging (MRI), and ultrasound, which can be chosen according to your situation. Finally, it is important to be proactive in the management of established hemophilic arthropathy. Physical therapy and rehabilitation are the most common methods used in the treatment of hemophilic arthritis, which promotes the absorption of blood accumulation in muscles and joints, reduces inflammation and swelling, maintains normal muscle fiber length, maintains and strengthens muscles, and maintains and improves the range of motion of joints. Active and appropriate exercise during the non-bleeding period is essential to maintain the body’s muscle strength and to keep the body in balance to prevent bleeding. Physical therapy and rehabilitation should be carried out under the guidance of an experienced physiotherapist; patients with severe osteoarticular disability for whom physical therapy and rehabilitation are ineffective may be considered for surgical treatment with strict indications. If surgery is to be performed, a comprehensive care team consisting of experienced hematologists specializing in hematology, orthopedic specialists, bleeding and coagulation laboratory technicians, and rehabilitation physicians must be formed to guarantee the evaluation of the patient’s indicators during the perioperative period, the determination and smooth implementation of the surgical plan, and postoperative rehabilitation; patients with chronic joint synovitis with recurrent joint hemorrhage can be treated with radionuclide synovectomy, but they must be be operated by experienced doctors in hospitals with the necessary conditions.