Understanding, Treating, and Living with Haemophilia

April 17th is World Haemophilia Day – a time to raise awareness about this rare bleeding disorder and support those affected by it. At Sparkport Pharmacy, we’re committed to providing education and resources for our community members living with haemophilia and their families.

What is Haemophilia?

Haemophilia is a rare genetic bleeding disorder where the blood doesn’t clot properly due to insufficient clotting factors. These proteins work together to form blood clots that stop bleeding when a blood vessel is damaged. When someone has haemophilia, they bleed for longer periods because their blood cannot form a proper clot.

There are primarily two types:

  • Haemophilia A: Caused by a deficiency in clotting factor VIII (most common)
  • Haemophilia B: Caused by a deficiency in clotting factor IX (less common)

Haemophilia primarily affects males, though females can be carriers and may experience mild symptoms. The condition ranges from mild to severe, depending on the level of clotting factor present in the blood.

Recognizing the Symptoms

The signs and symptoms of haemophilia can vary depending on severity, but may include:

Common Signs

  • Excessive bleeding from cuts or injuries
  • Easy bruising
  • Frequent nosebleeds
  • Bleeding gums
  • Blood in urine or stool

More Serious Symptoms

  • Painful, swollen joints caused by internal bleeding
  • Deep muscle bleeding resulting in swelling, pain, and stiffness
  • Spontaneous bleeding without obvious injury
  • Bleeding into the brain (a medical emergency)

For those with severe haemophilia, even minor injuries can trigger serious bleeding episodes. Spontaneous internal bleeding into joints, especially knees, ankles, and elbows, is particularly concerning as it can lead to chronic joint disease over time.

Current Treatment Approaches

While there is no cure for haemophilia, significant advances in treatment have dramatically improved quality of life for patients. Modern treatments include:

Replacement Therapy

The standard treatment involves replacing the missing clotting factor through intravenous infusions. This can be done:

  • On-demand: Given when bleeding occurs
  • Prophylactically: Regular infusions to prevent bleeding episodes

Extended Half-Life Products

Newer factor replacement products last longer in the bloodstream, reducing the frequency of infusions needed.

Non-Factor Replacement Therapies

Recent innovations include medications that mimic the action of clotting factors or interfere with natural anticoagulants.

Gene Therapy

Promising clinical trials are underway exploring gene therapy as a potential long-term solution, possibly eliminating the need for regular infusions.

Prevention Strategies for People with Haemophilia

While bleeding cannot always be prevented, these strategies can help minimize risk:

Physical Protection

  • Wear protective gear during physical activities
  • Consider padding for young children learning to walk
  • Maintain good dental hygiene to prevent gum bleeding

Medication Awareness

  • Avoid blood-thinning medications like aspirin and NSAIDs
  • Consult with healthcare providers before taking any new medications

Lifestyle Modifications

  • Participate in appropriate physical activities that strengthen muscles without high injury risk
  • Maintain a healthy weight to reduce stress on joints
  • Follow a balanced diet rich in iron to prevent anemia

Medical ID

  • Always wear medical identification indicating haemophilia status

How Sparkport Pharmacy Can Help

At Sparkport Pharmacy, we offer services to support our community members with haemophilia:

  • Specialized medication management and dispensing of factor products
  • Educational resources for patients and families
  • Support in navigating insurance coverage

Join Us in Raising Awareness

This World Haemophilia Day, join us in raising awareness about this condition. Whether you’re directly affected by haemophilia or simply want to learn more, understanding this condition helps build a more supportive community.

For more information about haemophilia management or to discuss treatment options, please speak with your healthcare provider or visit us at Sparkport Pharmacy.

Remember: Early diagnosis and proper treatment allow most people with haemophilia to lead full, active lives.

This blog is intended for informational purposes only and should not replace professional medical advice. Always consult with healthcare providers regarding diagnosis and treatment of haemophilia.