Living with Hemophilia

Living with hemophilia poses its own obstacles, but improvements in treatment now make it likely that a child with hemophilia today will live a normal lifespan.

Hemophilia treatment centers

Among the most important resources available to patients and their families are specialized hemophilia treatment centers (HTCs).  In the U.S., more than 100 HTCs are funded in a government-fun network,  with many located at major university medical and research centers.

These centers can help patients and their families learn more about research, treatment options, symptom management, and support strategies, as well as on how to perform some treatments at home. Their emphasis is on preventive treatment.

People who are treated at HTCs are generally found to have fewer bleeding complications and hospitalizations, and are more likely to report a better quality of life, possibly due to the centers’ comprehensive approach to care.

Most HTCs include nurses, adult and pediatric hematologists, social workers, physical therapists, orthopedists, and dentists on their staff — and many patients rely on these teams for their annual checkups, even if this means traveling some distance. To find an HTC near you, you can search in the Centers for Disease Control and Prevention directory.

Many researchers leading clinical trials in hemophilia also rely on HTCs to help them find study participants.

Preventive self-care

If you have hemophilia, you can take steps to avoid complications by:

  • Following your treatment plan strictly, as prescribed by your doctor prescribed
  • Getting regular checkups and vaccinations
  • Telling your healthcare providers about your condition – you may also want to tell your employee health nurse, gym trainer, or sports coach so they know what to do in case of emergency
  • Having regular dental checkups and telling all dentists you see that you have hemophilia – they can offer a medicine to reduce bleeding during dental work;
  • Knowing the signs and symptoms of bleeding in joints and other parts of the body, and knowing when to contact your doctor or go to the emergency room
  • Keeping a record of your previous interventions and treatments to take with you in case of an emergency

When your child has hemophilia

Being a parent of a child with hemophilia can be challenging. Parents are advised to:

  • Talk with doctors and other health professionals to stay informed about treatments, prevention steps, and what to do during an emergency
  • Rely on resources available at a local HTC, on the internet, and in books and other material provided by national and local hemophilia organizations
  • Find a support group for the child, and for you and your family – some groups include activities like summer camp. Check the references for groups that you are thinking of choosing
  • Keep your child updated about his/her treatments, using terms that a child can understand
  • Reassure your child that hemophilia is not his or her fault
  • Avoid potential hazards at home and at play: Make sure young children wear kneepads and elbow pads as well as helmets when riding tricycles or bicycles (helmets for older children); use safety belts and straps in highchairs, car seats, and strollers; put silicone or rubber to pad the edges of furniture with sharp corners (or remove such furniture); keep small objects, like scissors, in safe and hard-to-reach places; check outdoor play areas and equipment for possible dangers.

Learn about the signs and symptoms of bleeding, and be prepared for episodes when they occur. Parents of children with hemophilia are advised to keep a treat ready in the freezer at all times – popsicles are great for stopping minor bleeding in the mouth.

Make sure that people with responsibility for your child know of his or her hemophilia and aware of how to respond in an emergency. These people may include babysitters, daycare providers, teachers, sports coaches, or supervisors of afterschool activities.

Consider giving your child a medical ID bracelet or necklace to serve as an alert to others.

Insurance considerations

Clotting factors can very expensive and, in the U.S., not all health insurance companies cover this treatment equally well. For this reason, it’s important to:

  • Be aware of your coverage and the treatments it covers
  • Find out if your insurance has a limit and what that amount may be
  • Be aware about potential restrictions or if waiting periods are in effect

When considering a change of employment, parents and adult patients are advised to also look into the health insurance packages available with a new company. Coverage options could weigh in this decision.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.