Tips for living with a bleeding disorder
See a haemophilia doctor or nurse regularly
People with bleeding disorders should register with a treatment centre that specializes in the diagnosis and treatment of bleeding disorders, as they are likely to offer the best standards of care and information. Search the Global Treatment Centre Directory to find the nearest treatment centre.
Treat bleeds quickly
When you stop bleeding quickly, you have less pain, and less damage to joints, muscles, and organs. Also, you need less treatment to control the bleeding.
Carry medical identification at all times
Always carry information about your disorder, the treatment that has been prescribed, and the name and telephone number of your physician or treatment centre. In emergencies, a medical bracelet or other identification such as the WFH International Medical Card, notifies healthcare personnel of your bleeding disorder.
When travelling, find the addresses and telephone numbers of the bleeding disorders treatment centres at your destination(s) and bring the information with you.
A healthy diet and regular exercise keep the body healthy and strong. Exercise can also help reduce stress, anxiety and depression, and reduce the frequency and severity of certain types of bleeds.
People with bleeding disorders who are at risk of joint bleeds should avoid high-impact activities and sports such as football, wrestling, and skateboarding, but should still remain active. Ideally, exercises should be prescribed for people with bleeding disorders by a skilled and experienced doctor or physiotherapist.
Go For It!: A pocket guide to safe physical activity and sports for people with haemophilia and related bleeding disorders.
Exercises for People with haemophilia: Some people with haemophilia avoid exercise because they think it may cause bleeds, but regular physical activity can actually help prevent bleeds and joint damage. This illustrated guide includes a detailed description of exercises designed to counteract the long-term effects of joint and muscle bleeding and the tendency to develop abnormal postures.
Check all medications with your doctor
Some over-the-counter medications and other drugs should be avoided because they interfere with clotting. People with bleeding disorders should not take acetylsalicylic acid (ASA or Aspirin®) or nonsteroidal anti-inflammatory drugs (such as ibuprofen and naproxen) without medical advice. Check all medications with your doctor, and consult this list of medications to avoid.
Take care of your teeth
Good oral hygiene is essential to prevent tooth decay and gum disease. People with bleeding isorders should maintain good dental health to reduce the need for dental surgery, which can be complicated by excessive or prolonged bleeding.
Oral Care for People with haemophilia or a Hereditary Bleeding Tendency: Oral disease may affect general health and may, in people with a bleeding tendency, cause serious bleeding. This paper offers valuable information on preventative tooth and gum care for people with haemophilia and other bleeding disorders.
Dental Management of Patients with Inhibitors to Factor VIII or Factor IX: Suggests management strategies that reduce the need for dental intervention or allow treatment without the need for prophylactic coagulation factor cover.
Avoid muscle injections
A muscle injection could cause painful bleeding. However, vaccinations are important and safe for people with bleeding disorders. Most medications should be given by mouth or injected into a vein rather than into a muscle.
Talk to others
Learning you or your child has a bleeding disorder can inspire fear and anxiety. For others, a formal diagnosis can be a tremendous relief. Parents may feel guilty to learn their child has inherited a genetic disease. All these feelings are normal, and are likely to change over time.
Talking to others—friends, parents, healthcare professionals, and other people with bleeding disorders—can be a great comfort. Contact your local patient organization or haemophilia/bleeding disorder treatment centre.
Help children lead a normal life
With adequate treatment, most children can live perfectly healthy lives. While it is natural for parents to be concerned about their child, it is important not to over-protect them.
Children should be educated about their disease and how it should be treated from an early age. The more they know about and understand their condition, the better equipped they will be to handle any situation that arises.
Psychosocial Care for People with haemophilia: Psychosocial support is an important part of comprehensive care for people with haemophilia. The aim of this monograph is to guide parents and healthcare providers in the interventions and support that can be provided at all stages of development, from birth to adulthood.