If your loved one has hemophilia A, they lack a protein called clotting factor VIII. This means they may be more susceptible to excessive bleeding when injured, or they might start to bleed without warning or explanation.
The World Federation of Hemophilia estimates that 1 in 10,000 people are born with hemophilia A. Despite the rarity of this blood disorder, it’s important to realize that your loved one isn’t alone. They’re also lucky to have people who care about them and their condition.
Below are just some of the best ways you can help support a loved one with hemophilia A.
When a loved one has hemophilia A, it’s perfectly understandable to worry about their safety during certain activities. Some exercises, such as contact sports, are considered particularly high-risk given the types of severe bleeding that can occur. You may be tempted to advise them to refrain from all activities, but doing so could negatively impact their physical and emotional well-being.
While high-contact sports and activities with a risk of head injury aren’t recommended, the World Federation of Hemophilia says that walking, swimming, and cycling are generally safe. Instead of banning all sports, help your loved one figure out ways they can protect themselves from bleeding episodes. Depending on the severity of their hemophilia A, they may need to take certain precautions. Do they need protective gear? Do they need to take a desmopressin (DDAVP) injection or have an infusion before the activity? Be there to support your loved one without getting in the way of activities they can enjoy safely.
One way to help your loved one take precautions during higher-risk activities is to have a first-aid kit handy that includes their medication. Bandages are perfectly adequate for covering a small cut or scrape after applying pressure to slow or stop the bleeding. You can also have ice packs on hand to treat bumps and help prevent bruising.
Getting a cut with hemophilia A often requires more than a bandage and hug. Since your loved one doesn’t naturally have the clotting capabilities needed to stop the bleeding, they’ll need some extra assistance. You can help by applying pressure to the wound with gauze (this is especially helpful in those hard-to-reach areas of the body). Once the bleeding subsides, apply a bandage to the area to protect the wound. If the bleeding doesn’t stop, take your loved one to the emergency room and call their doctor.
While most infusions are done in-office, some people with severe hemophilia A may need to conduct them at home. If your loved one’s condition is milder, they may still need to take DDAVP on their own in case of an emergency or as a preventive measure. Learn how to administer these medications in case your loved one needs help. Ask a doctor for some advice, or even let your loved one show you how if they are able.
Between regular checkups, treatment appointments, and physical therapy, your loved one may be exhausted from all the driving around. You can help by offering to drive them to their appointments whenever you are able. Doing so can help your loved one save their energy, so they can focus on what matters most: getting well. Plus, if they’ve had a lot of bleeding from joints in their knees and ankles, driving a car can be extra challenging.
Living with hemophilia A is a lot to manage, and your loved one is likely more focused on treatment and prevention than the status of their condition. You can help by becoming their researcher: Are there any new up-and-coming treatments to discuss with their doctor? What side effects do these treatments have? Are the medications your loved one is taking working as they should? Are there any clinical trials underway?
You can also help your loved one by accompanying them to their doctors’ appointments. Offer to take notes and lend emotional support. Your loved one will let you know their limits when it comes to your attention.
Hemophilia A is a lifelong condition that has no known cure. You can help improve your loved one’s quality of life by offering both moral and medical support. Proper care can help ensure a normal lifespan. So, while you might feel helpless in the face of your loved one’s condition, you’re likely doing much more than you realize.