Hemophilia and Where To Find Help

March 3, 2022 —

Billy is a young boy with hemophilia, and in this video from the CDC, he answers some questions his friends ask about the disease.

Hemophilia is an inherited bleeding disorder where the blood does not clot properly. Billy explains when he has a cut or injury, he will bleed longer than his friends, and he even needs special treatment to heal. He also shares how sometimes he can have painful internal bleeding, requiring the use of crutches until the swelling goes down, but this only happens if he forgets his treatment infusions.

What Does This Mean?

While Billy needs to be extra careful not to injure himself by avoiding things like contact sports and other dangerous activities, he doesn’t need to “wear bubble wrap” to protect himself. Keeping up with his medications and looking after himself keeps him safe.

Billy is one of many people in the world affected by Hemophilia. Due to the way in which this inherited disease is passed down, it’s rare for women to have it —although they can be carriers. Hemophilia occurs in about 1 of every 5,000 male births. It’s estimated that as many as 33,000 males (from all racial and ethnic groups) are currently living with hemophilia.

Causes and Symptoms

Blood contains many proteins called clotting factors that help stop bleeding. People who have hemophilia have low levels of clotting factor VIII (8) or clotting factor IX (9). Each person can have a different severity of this disease, based on the amount of factor in the blood.

There are several different types of hemophilia too. The two most common are:

  • Hemophilia A (Classic Hemophilia): lack or decrease of clotting factor VII
  • Hemophilia B (Christmas Disease): lack or decrease of clotting factor IX

Hemophilia A is four times more common than Hemophilia B. The symptoms of this disease are all similar, regardless of the type. Below is a list of some of the frequent symptoms seen:

  • Joint bleeding – causing swelling, tightness, and pain in the joints. Joint bleeding often affects the knees, elbows, and ankles
  • Bleeding (bruising) into the skin or muscle tissue causes a build-up of blood in that area – these are called hematomas
  • Bleeding in the mouth or around the gums. Loss of a tooth can also cause bleeding that is difficult to stop
  • Bleeding after circumcision
  • Excessive bleeding after having shots, such as vaccinations
  • Bleeding in the head of an infant after a difficult delivery
  • Blood in the urine or stool
  • Nose bleeds that are difficult to stop

Hemophilia Diagnosis and Treatment

The diagnosis for Hemophilia works through screening and clotting factor tests. When Hemophilia has been present in a family’s history, many people will choose to have their baby boys tested soon after birth. Ideally, this is planned prior to birth so sample blood can be drawn from the umbilical cord immediately after birth. Umbilical cord blood testing is more effective at finding low levels of factor VIII and factor IX.

The best treatment for Hemophilia is to replace the missing clotting factor to allow the blood to clot properly. Thanks to scientific advancements, there are now commercially prepared factor concentrates safe from transmitted diseases and can be infused in the home setting.

Consistent and high-quality medical care from providers familiar with this disorder can help prevent complications. Often the best choice of care is to visit a comprehensive Hemophilia Treatment Center (HTC). These centers provide comprehensive care, as well as providing health education to help people with Hemophilia stay healthy.

Treatment for Hemophilia is a lifetime expense that can be very costly. The average cost is $40,000 to $50,000 a year. Complications from Hemophilia can bring further expenses, which may be over $100,000. People who do not have health insurance may have to rely on charitable foundations and government aid for help.

Our Hemophilia Fund

Accessia Health has an established Hemophilia fund to help patients with Hemophilia, and provide financial assistance for insurance premiums.

For more information, or to see if you qualify for assistance in any of our available programs, check out our prescreening tool and apply today. You can also call us at 1-800-366-7741.*

To donate to this fund, click here and fill out the donation form. Make sure to designate your gift to the “Hemophilia Fund.”

 

*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything that you may have read in this blog, on this website or any linked materials contained within. Thank You.