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Hemophilia

How Hemophilia Treatment Works

Bleeds can happen at any time. And when it does, your routine is thrown off and you or your child may even have to deal with temporary pain.   

At OIC’s Hemophilia Treatment Center, we understand that hemophilia and other bleeding disorders are serious, lifelong conditions. But that doesn’t mean you have to keep yourself or your child in a cocoon.  

With the right medical team, you or your child’s bleeding disorder may be a part of your life, but it shouldn’t be the focus.


 

Tailor-Made Hemophilia Treatment

Patients with hemophilia or other bleeding disorders need more than just medical management. They also need social, psychological, and orthopaedic care. We treat the whole patient, not just the disease. 

We also recognize that each person who comes through our doors is different. So we customize treatment according to each patient’s needs. 

We screen for, diagnose, and treat several different bleeding disorders, including: 

  • Hemophilia A and B
  • Von Willebrand’s disease
  • Rare factor deficiencies
  • Platelet disorders

 

How Is Hemophilia Diagnosed?

Hemophilia is often diagnosed soon after a baby is born. For example, if you have a family history of hemophilia, your child’s pediatrician might order a test right away. The pediatrician also might run a test if your child is showing immediate signs of hemophilia, like excessive bleeding after circumcision. 

However, kids can be diagnosed later, particularly if they have a mild case. If your child’s physician suspects hemophilia, we can perform testing at OIC. 

Diagnosis usually involves screening a child’s blood and running some special tests.


 

Hemophilia Treatment: Replacing the Missing Factor

Replacement therapy is the main treatment for hemophilia A and B. That means the missing or deficient clotting factor is injected back into the body to help the blood clot normally.  

There are many different clotting factors available now.  Most of the clotting factors are recombinant, meaning “man-made” in the laboratory, and very safe.  Clotting factor can be given at home, and patients and parents can learn to infuse at home. 

This is called self-infusion, and one of our top goals at OIC is to teach patients to do it properly. 

Because of self-infusion, people with hemophilia can confidently live and move without all the hospital trips and restrictions. Self-infusion means that bleeds can be prevented or treated earlier, before long-term damage occurs.  

It also means that children will miss less school and adults will miss less work and other activities. Families are free to plan vacations and have more control over their lives.


 

When Factor Is Attacked by the Immune System: Understanding Inhibitors

After treatment, you or your child will have new clotting factors in the bloodstream. In some cases, the immune system may “see” the clotting factors as foreign invaders.  

So it starts to produce antibodies that attack the clotting factor like a virus or bacteria. Those antibodies are called inhibitors.  

Those with hemophilia A seem especially vulnerable to problems like these. About 30% of people with severe hemophilia A, and about 5% to 8% of people with mild to moderate hemophilia A, develop inhibitors as they’re being treated.  

About 3% to 5% of people with hemophilia B also develop inhibitors. Those with hemophilia C also can develop inhibitors, as well. 

People with inhibitors generally don’t respond well to regular clotting-factor treatment and need special factor infusion. Even after treatment, they may still have bleeding problems. The cause of inhibitors is unknown, but there are some risk factors: 

  • African-American or Hispanic ethnicity
  • A family history of inhibitors

 Everyone with hemophilia should have a blood test to screen for inhibitors at least once a year.


 

Is There Treatment for Inhibitors?

Yes. Care providers can treat inhibitors in several ways: 

  • Bypassing agents: These are unique blood products that are used in place of clotting factor to treat a bleeding episode. If you or your child are taking bypassing agents, a care provider will need to watch closely to ensure that the blood isn’t clotting too heavily, or isn’t clotting in incorrect locations within the body.
  • Immune Tolerance Induction (ITI) Therapy: This involves “teaching” the immune system to accept the clotting factors. With this approach, you or your child receives large quantities of clotting factor daily for several weeks or months.

 

Joint Reconstruction

People with severe hemophilia bleed in their joints. This can happen after an injury, but many times there is no obvious trigger. The blood eventually fills the joint cavity, putting pressure on the bones and causing joint damage over time.  

If hemophilia has started to take a toll on the joints, a physician may prescribe physical therapy or pain medication.  

Joint damage is a common problem for many people with hemophilia. Sometimes, despite the best efforts to prevent it, joint damage progresses to the point where the pain is chronic and stops the patient from moving as well as possible.  

In these cases, joint surgery, reconstruction, or replacement is the best option. During this procedure, the surgeon removes the damaged bone, then replaces it with plastic and metal components. 

Performing surgery on people with hemophilia requires an experienced team of surgeons, hematologists, nurses, physical therapists, and social workers. At OIC, our staff is ready to provide this leading-edge care for our patients.


 

Physical Therapy: Gaining Control Over the Body

If you or your child has hemophilia, can physical therapy help? Yes! Physical therapy can have two main roles in the treatment of hemophilia patients: preventing bleeds and restoring joint health after bleeds. 

With preventative physical therapy, patients will:

  • Strengthen the muscles around their joints
  • Learn joint control exercises to keep the bones moving in good alignment 

Restorative physical therapy takes place after physicians have already treated and stabilized the joint bleed. The goal of this kind of physical therapy is to increase:

  • Motion
  • Strength
  • Control
  • Endurance
  • Balance

 

Hemophilia Carriers: Genetic Counseling and Testing

The sister of a man with hemophilia has a 50% chance of being a carrier. That means she has a 50-50 chance of having a child with the condition, too.  

At OIC, we offer counseling and testing to women who are at risk of being carriers. During testing, the gene mutation responsible for hemophilia is identified in DNA from the male relative with hemophilia. Then, the female relative’s DNA is tested to see if she has the same mutation. 

We also offer prenatal tests and diagnoses to families with a history of hemophilia. The major reason for prenatal diagnoses is to determine if special arrangements need to be made for safe labor and delivery.  

And we have social workers and counselors on staff to provide support to expecting parents if they need it.