Home treatment and care for patients with hemophilia

  Hemophilia is a group of hereditary bleeding disorders that result in a lifelong tendency to bleed due to a lack of clotting factors VIII and IX in the blood plasma, resulting in impaired clotting. Long-term recurrent bleeding not only causes great physical and psychological pain to patients, but can even cause lifelong disability or death. Currently, the only effective treatment is substitution therapy. However, if hemophilia protection knowledge is in place, prevention and care measures are appropriate, and patients receive safe and effective medication early, bleeding can be reduced or avoided, reducing morbidity and mortality and improving patients’ quality of life. Therefore it is important for patients with hemophilia to know how to treat and care for them at home to reduce bleeding.  Home treatment The earlier the treatment, the better: Early treatment can reduce the pressure of bleeding on surrounding tissues and prevent tissue destruction. Rapid hemostasis facilitates a rapid return to normal function without long-term complications. Early treatment can also reduce the amount of clotting factors. To illustrate bleeding more graphically, let us compare it to a “fire”. When the fire is small, a bucket of water is all that is needed, but when it spreads, more water is needed to put it out. If the fire is not put out in time, a large forest fire often requires firefighters and professional equipment, and consumes a lot of water to put out the fire. This also puts people in danger for long periods of time. Bleeding, like fires, can be stopped with very little clotting factors when the burn material bleeds when treated early and promptly; if the bleeding is allowed to spread, it is not easily stopped and requires more treatment, and may also cause long-term damage to the patient. Hemophiliacs know by experience that bleeding is occurring before signs of bleeding appear. The precursors of bleeding in hemophiliacs vary, and are generally fever and swelling sensations.  While advocating early treatment, it is impossible not to mention home treatment. As home treatment, early infusion is very effective in controlling bleeding. The earlier treatment is started the better the results. The bleeding is milder with home treatment and less clotting factors are used per bleeding. Home treatment is very important, if not more necessary, in China where health care facilities, manpower and funding are effective. Hemophilia is a disease that is going to stay with the patient for the rest of his or her life, and self-injections also make an important step towards independence for people with hemophilia. Once home treatment is learned, one finds that bleeding does not disrupt the patient’s daily life and buys time and saves money for early treatment. Most patients with mild and some heavy and moderate hemophilia can be treated at home. Those with highly suppressive substances and some infants and children who have difficulty with intravenous infusions are not suitable for home therapy. The decision as to whether home therapy is appropriate should be made by a medical professional in contact with the patient and his or her family.  Selection of the target group for home treatment: A refrigerator is available in the home and the area has normal electricity supply to ensure effective preservation of lyophilized F VIII and prothrombin complex. Patients or relatives have a certain degree of cultural knowledge and good vascular conditions, and can be more cooperative in treatment.  Home care Try to eliminate the triggering factors for bleeding: Although hemophiliacs have a tendency to bleed, some triggering factors can cause or aggravate bleeding, such as local or internal bleeding caused by overexertion or external forces such as falls, bruises, bumps and sprains; bleeding can also be caused by surgery, tooth extraction, injections, needles and other treatments; improper diet, such as drinking large amounts of alcohol or eating foods with bone spurs, rough and hard foods and other Improper diet, such as heavy alcohol consumption or consumption of bone spurs, rough, hard food and other irritating foods, can cause bleeding in the mouth or digestive tract; dry nose, sore throat, gingivitis, etc. can also cause bleeding; and bleeding from tooth replacement in children. Patients with hemophilia and their families should understand and recognize these triggering factors to minimize and avoid bleeding in their work and life.  Do not conceal the condition: Concealing the condition can easily lead to delayed treatment. It is necessary for the patient or the affected child’s relatives to explain the condition, the management of bleeding and related protective knowledge to their kindergarten, school or workplace so that the family and these units can work together to care for and focus on the patient. Patients and their families should keep in mind that whenever and for whatever disease they visit the clinic, they should not neglect to explain the facts of hemophilia to the medical staff who treat them, in order to prompt the choice of applying safe and reasonable treatment and prevent accidental bleeding. In addition, parents of children with hemophilia should pay special attention to the fact that they should not overly scold their children after each bleeding episode, because excessive scolding will make it easy for the child to conceal the condition for fear of criticism after the bleeding, the consequences of which are often unimaginable.  Avoid overexertion and trauma: Children with hemophilia should be restrained to go to activities, and should not climb high, jump, kick the ball, long-distance running and other intense sports, and abstain from fighting and brawling behavior. Live a regular life and ensure sufficient sleep, even on holidays, do not stay up late for pleasure in order to avoid bleeding caused by overexertion.  Contraindication of aspirin application: Do not under any circumstances apply drugs containing aspirin (chemically named acetylsalicylic acid), which can prevent platelet aggregation and thrombosis; damage the gastric mucosa and cause bleeding.  Prophylaxis: Prophylaxis is the best treatment to prevent hemophilia. In medium/heavy hemophiliacs in childhood and adolescence, if financially possible, prophylaxis can keep the clotting factors in their blood at a certain level and organize the development of hemophilic arthritis.