Hemophilia: What You Need to Know

Hemophilia is a genetic bleeding disorder that makes it hard for blood to clot properly. If you have hemophilia, even a small cut can lead to a longer bleed, and deeper injuries might cause serious internal bleeding. The condition is caused by missing or low levels of clotting proteins called factors, most commonly factor VIII (Hemophilia A) or factor IX (Hemophilia B).

Because hemophilia is inherited, it usually runs in families. It’s passed down through the X‑chromosome, so most people with the condition are males, while females can be carriers and sometimes show mild symptoms. If you suspect it runs in your family, a simple blood test can confirm factor levels.

Types and Symptoms

There are two main types: Hemophilia A (deficiency of factor VIII) and Hemophilia B (deficiency of factor IX). Both behave similarly, but the specific factor missing determines the label. Severity is grouped into three levels based on factor activity: severe (less than 1% of normal), moderate (1‑5%), and mild (5‑40%).

Typical signs include:

  • Frequent nosebleeds that don’t stop quickly
  • Unexplained bruises, especially on joints
  • Joint swelling or pain after minor bumps
  • Prolonged bleeding after cuts, dental work, or surgery
  • Dark urine or blood in the stool for severe internal bleeds

If any of these show up repeatedly, see a doctor. Early diagnosis lets you start treatment before damage builds up, especially in the joints.

Managing Hemophilia

Modern treatment centers on replacing the missing clotting factor. You can get factor concentrates through an IV pump at home or in a clinic. For mild cases, you might only need a dose before surgery or after an injury. Severe cases often require regular prophylactic infusions—typically two to three times a week—to keep factor levels high enough to prevent bleeds.

Newer therapies, like emicizumab, act like a bridge between clotting factors and can be given as a subcutaneous injection once a week or less. Gene therapy is also emerging, offering the hope of a one‑time treatment that could raise factor levels for years, though it’s still limited to certain patients.

Living with hemophilia also means planning your everyday activities. Here are a few practical tips:

  • Wear a medical alert bracelet so emergency staff know your condition.
  • Keep a “bleed kit” at home, work, and in your bag—include factor concentrate, a tourniquet, and instructions.
  • Stay active, but choose low‑impact sports like swimming or cycling to protect joints.
  • Maintain a healthy weight; extra pounds put more stress on joints that are already vulnerable.
  • Stay up to date on vaccinations, especially hepatitis A and B, because past treatments used blood products.

Regular check‑ups with a hemophilia treatment center are key. They’ll monitor factor levels, joint health, and any antibodies your body might develop against the replacement factor, which can make treatment less effective.

While hemophilia adds extra steps to daily life, most people lead full, active lives with the right care plan. Talk openly with your doctor, follow your infusion schedule, and don’t hesitate to reach out to support groups—sharing experiences can make the journey easier.